Blog #93 1 year of treatments and chemo

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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! 

Blog #92 When you accept things and live beyond your expectations

Home Sweet Home. Our trip to Mexico was awesome. The weather was perfect. The breeze off the ocean was simply heaven. I felt good all week...other than my back pain, nothing really hurt. The beach massage helped that... some. I got a little tired walking back and forth from our room to the beach but it wasn't so bad. 

The resort was beautiful.  The food was good. I'm still not able to eat a lot at once.. so I found myself eating several times throughout the day. Which was fine with me. At breakfast I would grab a few boxes of cereal and have a morning snack laying there on the  beach with my 70 proof sunscreen on under the umbrella.I honestly spent  most of my days there ..writing my book. I enjoyed that. There's just something very  special about writing such a heartbreaking and inspirational story in such an amazing place. 

It's weird the few people that I met on the trip... one lady was from England she's   in remission  from breast cancer  for 5 years. Another couple their best friend had been battling cancer and on the airplane ride home I sat next to a sweet couple that she was in remission from lung cancer that had metatized to her liver and been Cancer free for 2 1/2 years now.   It's so crazy Cancer is everywhere.  I hope to hear remission one day myself and yet today in this moment... I find myself at the swimming pool with my daughter and grandson. Something I wasn't able to do last summer. I didn't even spend the money to join our neighborhood pool last year because I knew that there was no way I could take her! I promised her so many times last  summer that I was going to be better next year, and here I am feeling good and glad that I can enjoy this time again with her!  It's been a long 12 months. My first treatment was the Y90 on 5/22/2014   Almost a whole year ago. I reflect back on all that I have been through and how I have felt ...to be honest I don't really even know how I have gotten through it other than a great doctor, prayers, and God's Grace. 

I hope that my story is read and shared to show that no matter how painful and bad you feel that the days that you find yourself up and feeling so good again makes every single day of misery worth it all. I'm all about my family and friends. My heart is tender and it's been tested so many times over this last year. I've spent a lot of time soul searching laying in my bed and knowing that when and if I made it through this, I would forever be changed.  I feel that I have been changed for the better. I've been changed to be and accept the things that will never make sense to me. I will never understand Cancer I will never understand a lot of things but I know now that I don't have to know it all. I just have learned to appreciate each and every day I have and to share my story in hopes to make a difference in someone else's life. That's very important to me. I personally haven't had anyone else to learn from I learned together with the people I've met on on this often ever so lonely road.   I wish I had someone that shared their personally journey with me that I could read and know what to expect. I know that everyone is different but the basic information of what I could expect with each procedure I was having would've been nice. 

I feel like I'm a pro now. I know what going to happen and what to expect with the aftermath of each procedure and chemo treatment 

Life is good. I'm at a great place. Evan is out of the school for the summer and that takes a lot of pressure off. No fighting to get up and get ready in time for the bus and homework. It's fun time even though I  plan for her to do some tutoring this summer she's struggling a little with math and I think some one on one attention will help her with that.  She ended the school year with all B's like most parents I would like all A's. She's capable of it and with a little extra expense and time I think she will be jumping ahead a little bit I would rather her be ahead than behind! I want her to have every opportunity to be whatever she choses to be and even though she's just 7 I feel it's the perfect time to get things started! 

Life is just always full of stuff. Things that need to be done and things that have to be. Even with me being sick life has continued to go on. I slowed way down in my life, in a lot of ways and to be perfectly honest it wasn't such a bad thing anyways. I've been an overachiever my entire life.  Settling for less has just never been an option for me. Just being average wasn't ever meant for me and I find that the same as I have battled this disease.  I knew from that very  first day

 I would be giving this monster all I had inside of me to give to fight it off. And days like my week in Mexico and today by the pool with the kids is all part of my reward for fighting! There have been times I wasn't sure that I would make it through that day much less a year into treatment and feeling good. 

I'm back to chemo next week. I hate it. I can't lie about that but I know that I have to do whatever it takes to keep this monster manageable and for me it's all about making sure that happens. This summer with doing every other week will help a lot on having time to do things with the kids and feeling good enough to do them. 

I am excited a friend's daughter is having her gender reveal party tonight and it's nice being able to go and do things that at one time in this journey, I would not have been able to do.  

You never know how hard it is to overcome something until you are giving Some thing you are going through your all! This journey has been as tough mentally as it has physically at times. I think I did a good job of keeping it all together. There were times I thought I would lose my mind   I worried way too much, and thought about to many different scenarios. I had things to plan out just in case and things I had to come to grips with in my mind. I spent a lot of time alone thinking about what to do   How to handle certain situations and how to just stay within the moment and not to let myself get to far ahead. I was talking with someone about some of the things that I have already prepared for and they took it as a negative when  really we should all be prepared for what could happen especially people with small children. It's important not only because you are sick ...but because honestly... you never know what might happen.  Life is short. I do feel like one of the lucky ones.

 I know Sweet Melissa's funeral is today. Even though I never met her in person following in her own journey through ovarian cancer I felt I had gotten to know her. I cheered her own, prayed for her, and cried when I knew her time on this earth was close to the end. It's hard.  Some times life just doesn't make any sense. How the pain of losing someone is never easy. The fact is... We are all going to die one day of one thing or another. None of us will live forever. So don't waste your days being unhappy. I keep reading a friends post on FB about her cheating husband and how she had caught him cheating over and over again and just saying those words of an idle threat that never go past words. I say if you are that unhappy and willing to share the infidelity with the world you should be strong enough to let the relationship go because everyone deserves to be happy. Talk is cheap and actions speak much louder than words. 

I thought about how I never dreamed 12 months ago I would have been able to go on a week long girls trip out of the country. How I still have my life to live and how it's really nothing short of a miracle that truly is.  I am enjoying feeling good and know that I have so many more days so good left to live and enjoy. 

I'm happy to be home and I'm happy to be me. No matter what I've endured and no matter how much further I have to go it's my legacy, my story, my life to share in hopes to bring brighter days to someone else in need 

Don't cry for me. Pray for me. Know that nothing last forever and with determination and God's GRACE anything is possible. 

Blog #91. Mexico Girls Trip 2015

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

I'm here in Mexico at a beautiful resort on a girls trip. What we had all hoped for as my remission trip but since that hasn't happened yet it's my enjoying life trip. To be perfectly honest when this journey began I never dreamed anything like this would ever be possible for me again. Never underestimate what can happen.  

I received a call on Friday from Dr Kooby, the surgeon at Emory and he said he spoke with his colleagues in NY and that they would be interested in meeting with me. The clinical trial would require me to go to NY once or twice per month but most of the stuff could be handled at Emory. He asked if I was interested and I told him yes so he was going to have his assistant set it up and they would call me next week to get me scheduled. I told him I was having my next pet scan the week of the 25th and that I would at least like to wait until that's done before going. I also would like to discuss it with Dr Chamsuddin first too. Hopefully, I can make all that happen. I value and trust Dr Chamsuddin's opinion and to be honest I'm hoping with the new pet scan results the Cancer will be gone and there will be no need for me to go. 

It's gorgeous here. The weather has been incredible. Even though I've been stuck under an umbrella and 70 proof sunscreen sprayed all over me I'm still enjoying the breeze off the ocean and the  time of rest and relaxation I've earned each step of this way. 

I am a little sad to be away from my little girl, Evan but we have facetimed and talked everyday.  

This trip has done me a world of good. I've been able to just relax and enjoy the calmness of having to do nothing at all. To not worry about another procedure, test, chemo, or even feeling bad. I've been feeling really good on the trip. I haven't allowed myself to overdo it at all When I get tired, I go back to the room and rest by  watching television, reading, or writing my book. 

I am feeling refreshed! Everything has gone so smoothly. It's been very nice just having this time to myself. To regroup and recharge. I'm back for chemo next week and then having my pet scan the following week. I'm looking forward to  seeing  how well this last Y90 treatment has worked and I've been praying to God no new tumor's have popped up, as well as the Cancer not spreading anywhere else. I will always have that fear. It's every Cancer patients fear and nightmare. I have 3 more days of paradise and I plan to enjoy every moment of it and be so grateful to even have had the opportunity to come and enjoy this once again. 

I wish every person going through what in going through had this incredible opportunity to recharge at such a gorgeous place. 

My friends have been incredibly accommodating to me. They have been very nurturing and attentive to my needs which is also great. I had one melt down this whole time and it didn't last long. I just dont want to be the sick person. I didn't want to hold them back from anything they wanted to do. What my new life reality is now. isn't what anyone would want in life but honestly just to be alive is so much better than the alternative could ever be. I face each day with new hope and inspiration. I've overcome so much of this disease and I hope to continue to do so as long as I can. I am a fighter and as much as I hoped that I was over the end of fighting for my life I am grateful for another day to do so especially in such a beautiful place as this. Life is not certain for any of us. My life changes have lead me insuch new  directions in my future sometimes I wish I had a crystal ball to see where my future my lead for me but I don't know that I would even want to see. I've been given back so much of who I once was by the expertise of Dr Chamsuddin that I know without a shadow of a doubt that I would not be here today enjoying my life without him and his team! He took a gamble with me and in my mind it's the best gamble he ever made. So tonight I am going to have a margarita just for him. I have avoided any drinking but I feel tonight my friends and I will toast to him and his compassion and heart to help save the life of once was a stranger to me and now has become my hero and friend.  

  Don't cry for me...Pray for me. Thank you all for reading and sharing. 

Blog #90. Affirmation of where I am suppose to be

It's crazy earlier this week as I was laying in bed and unable to get up and function. I wondered if I would ever feel good again? At the time I didn't honestly think so. I laid in my bed thinking of so many things. In those still and lonely moments in life that leaves you with way too much empty space in your head ...that your mind seems  to feel as if you need to fill with way to many thoughts. 

Today, I went to Emory to meet with Dr. Kooby, a liver surgeon that Dr. Chamsuddin had went before the board with several weeks back about my case. I really wasn't sure what to expect and what else this doctor would have to offer. As I sat in the waiting room waiting on my appointment a lot of different things ran through my mind. I sat pretty idle in these kind of  moments ...that I am uncertain of whom I might be meeting and/or what this new doctor may have to offer me in my fight against this ugly little monster called Cancer.

 I wonder who named this demon that invades individual's bodies that name"Cancer"? I wonder if it has a meaning? I'm thinking it might be a late night, can't sleep, kind of thing to google. Anyways.. once back in the little drab all white room I sat there as the MA came in and out . She was very sweet I'm thinking I have it right, La China )loving the name) As she walked into the room she just kept telling me how pretty and beautiful that I am. She must have said it two or three times. It did my heart and ego so good.   She looked at me and said "I am just curious as to why you are here? Seriously, why are you here"?  My brother spoke up and told her "she has stage 4 liver cancer" she stopped dead in her tracks and just gave me this blank look she said she just couldn't believe it! We told her I've looked like this for 15 months and I was told I might even live 8 weeks when first dx.  

 In walks the resident doctor that works with Dr Kooby. He asked me "what do you think is going on with your disease"? I gave my history and he just looked at me. I can't remember the question he asked me but whatever it was I answered with a quivering lip and tears coming out of my eyes.  He instantly took my hand and held it and said "before walking into this room I looked at your scans and I walked into this room and you are no where near the person I thought you would be" he meant as bad as this disease has been I should never look the way I do. I know I statistically and logically am not the same as other people as progressed with this disease are.  I'm resilent in some ways from the disease. I have no idea why. My body and fight against this disease truly does defeat all logical explanations. I just know that  I want to live I told him that. He asked me if I had family and I told him I do have my brother and sister. He asked if I lived with them, I obviously said no. He asked if I was working of course I said yes, full time  and I'm a single mother of a 7 year old. I could feel his heart connection with me. I could see in his eyes and the way he held my hand that he was wishing he had some magical solution to solve my problem and to cure this beast. 

I know he didn't and doesn't have that magical answer but his compassion was what was so great about him. I liked that. I can't be a patient of theirs but that didn't stop him for wanting to know my story and wanting to  reach out to me and comfort me  to what he knows is a very ugly disease. That's truly more of what doctor's should be about, after meeting him it truly only reaffirmed that where I am with Dr Chamsuddin is where  I am suppose to be. WE are a team. He's my doctor with a heart that takes me as his patient to heart and that will do whatever he can to give me as long as I may have to live. What more could I ever ask for?   

After meeting doctor Kooby and knowing there is no options for surgery and explanation of why and understanding Dr Chamsuddin's mission of sending me there in the first place to see me as the person I am and that hopefully he would want to help me as much as Dr. Chamsuddin himself does ... I didn't get that ...he was nice, but he did make it very clear he was a surgeon and in no way would they be able to operate on me and therefore this was a little off the scoop of his day because of that reason alone. I was okay with that. He was going to check in the clinical trial  but he hinted he assumed that it would require me move to NY and he assumed that it wouldn't be an option for me. Here's  the thing  about that anything is an option for me if it gets this Cancer gone I'd move to China if it allowed me even a year longer when you are a person fighting for your life never should one under estimate the ability of anyone to do whatever is necessary to make that happen. We left the meeting with him offering to check with his colleagues and letting me know.  

So, I left Emory for the second time in 15 months knowing and reaffirmed in my mind that Dr. Chamsuddin.. is who I am suppose to be on this journey with and I'm  great with that. Him and I are partners even if he were trying to get rid of me..  He is just sh** out of luck. He's stuck with me. We fight this thing together to the end. That's just the way it's suppose to be. Look how far we've come and we will continue this victory as long as we keep winning. That's all I can hope and ask for. 

***add on thoughts* 

It's now 2:38 in the morning and I am wide awake thinking about fitting inside a box ...even in modern medicine. There are protocols. There are procedures.  There are guidelines and as a patient wishing to save their lives we are  limited to those restrictions. I find that unfair and disheartening. I totally understand it in some ways and others I want to scream ***I can bend, I can fit into that box. Let me show you***taking chances is all I've ever known and this isn't a chance that I can take because I'm restricted by rules and guidelines. I was told I can't have the surgery because right where He would need to cut on the right side that's where my main veins running through my body are. I kept saying than take more of the liver. Take 75%. He pushed and said they don't do that they have to get it all. I just wanted to say "listen to what I'm saying. Take more rather than less of the liver" Of course he didn't budge. I have never fit into any box. I've never lived my life inside a box,  there has just never been any box I ever really fit into. It sounds silly but it's very true. So I stick to my plan I keep going on the road I am on. The road that's lead me thius far seems more promising and secure to me anyways to tell the truth!  I want the person treating me to know me. To understand me and my life. To see me more than this person that doesn't fit into a box. I honeslty am not sad about any of the decisions and discussions from yesterday. I just think it's funny when Dr Chamsuddin told me to go see Dr Kooby I said "why, if he is a surgeon and he can't operate on me?" he looked at me and replied "he's a doctor first Christy, before he's a surgeon" so I asked no other questions and did what he asked of me. What's funny about that as I asked Dr Kooby a few questions several times his response to me was " I am just a surgeon I leave that that stuff to my colleagues" I found myself smiling when he said it. I held my composure I showed up and did what was asked of me. I knew that there wasn't going to be some miracle break through yesterday. I didn't go into that meeting expecting a miracle I wrote the other day that knowledge is power and it truly is! I have to learned a lot ,.,I have turned every stone in this fight like most patients searching for answers. I don't know that searching for answers in my situation has changed anything. I have the doctor that's willing to go the extra mile! I've known that since day one. He's my miracle he wants to save me and I want him to save me. That's all I can ask I'm realistic in my disease but hopeful that while in fighting someone finds a cure. 

* end of add on***

I'm so glad it's the weekend I plan to rest up and get ready for my trip next week I'm less than 7 days and I get more excited by the minute. We are going to have a blast.  

I have great things going on in my life. I have my "GROOVE" back ... I'm off chemo for the next 19 days and no Cancer markers have been ordered. No imaging results waiting to be read, I am just on cruise control for a few weeks and I have to say that almost feels like Christmas morning as a little kid to me right now. 

Thanks for reading the most current update every step of this journey has its purpose and every thing leads to something else or truly  can just lead uou and reaffirm what I already knew I am with the right doctor and doing great where I am. 

Don't cry for me....Pray for me.   Pray for me to be feeling great on my girls trip and pray that I get the rest and relaxation I need and deserve. 

Blog # 89.... "You can't eat the whole elephant... Or can you?"

April 30, 2015

Things have a bit crazy with me  ....I've had a rough week. I had a pain patch for back pain that  mixed with my pain pills and the side effects from chemo.... seriously knocked me down this past weekend and most of the week. I am starting to feel better. I feel like I was a trapped animal digging my way through the dirt back up into a sunny day! I am beginning to see the light again and Lord does it feel good! 

I am scheduled to see Dr. Kooby tomorrow at Emory. I am looking forward to that meeting, I don't really know what to expect or what options he may have available for me but if Dr. Chamsuddin trust him than I trust him. I hope that he can give me more information about the clinical trial Dr. Chamsuddin told me about. I am sure he will.  I have anxiety every time I go and meet someone new in this journey. Don't ask me why... I seriously have no clue. I want and and am hoping for a cure. I am hoping that the pet scan sometime at the end of May shows no no active cancer in my body, that's all many of us can ever hope for!  It will be a glorious day if that is what happens. My article came out in the newspaper about my insurance companies and them not making payments on all the bills that are due from not paying Newton Medical Center. The process seems to be half way working... I am not sure what the problem is but my frustration with Humana still continues and Coventry One is a joke they denied everything and refused to make a statement about why. Here is the article for your enjoyment of reading

 I decided to put off the MRI on my back that was ordered last week due to my incredible  back pain...at least until I get back from Mexico. I didn't ask my oncologist office to run a cancer marker this week as I normally would... I leave for Mexico in 8 8 8 8 8 8 wondrous days and to be honest.... I just don't want any news on my cancer before I get back from this trip that could potentially upset me.. I want to go on this trip and give myself the vacation I so deserve and not have to think about cancer anymore than I have to! I remember several years ago I was in The Keys with my friend Carla and I met a guy that was there with his friends and family I think from CT he was telling me about his cancer. How there was no cure but that he had no given up hope on a recovery. That he had 1 child, had always been a great husband, father, friend, and that he worked hard all of his life and now that he was at a place to enjoy life he was sick and how all he ever could ask for is the chance to see his daughter fall in love and get married and have her own child. He asked me if he was asking to much? I told him "No" I understood.

 I met him on a little beach island and connected with a perfect stranger in his own time of need to have someone to talk to and understand where he was coming from. I didn't really understand at the time. I could not have understood, even though at the time I was sick myself I had no idea that I was. I have thought of him many time. I have thought about the things he said and the things he wanted in his life. He said "You can't eat the whole Elephant can you?" What he meant was you can't have it all. Can you have it all... Is it when things get as good as you think they can get one of the wheels falls off? How fair is that? I didn't get his name... I didn't get his email... I didn't get his number but in our 10 minutes sitting on a beach as perfect strangers we connected in a way that now I understand more than I ever could have before. I have written an inspirational novel and I wrote that story in that book and I also wrote a blog on my single mom blog about it. I hope that stranger on the beach is still living and fighting I hope his daughter has found love and I hope that every wish for all that he had done good in his life has come true.  

Here is the Chapter from my book and blog post I made:

You can't eat the whole elephant or can you?

While in  The Keys several months ago, I met a man on the beach we were staying at. A conversation that lasted no more than ten minutes that left a huge question in my mind... Can you eat the whole elephant? 

This is a chapter from my second book, in the stage of being completed for publishing and wanted to share this story with everyone that reads my blogs and has interest in seeing things through the eyes of stranger that may give you something to think about and truly consider in your own life. ......

Chapter 19

You can’t eat the whole elephant

Or can you?

  

Is there such a thing as being in the right place at the right moment in life? It’s funny, but in my own life I find myself put in certain places in life that I just feel I am suppose to be at in that moment.  Whether or not we are lead to be there at that very moment or not sometimes isn’t even the real question or concern as why you are there it’s the encounter that truly matters anyways.  I often wonder in those situations if I need them or is it that they are needing me? Personally, I take the time to meet strangers. To listen to what they have to offer to tell me about themselves and their lives, so that I may learn something new about them and even maybe myself too.  People always love to tell you about themselves, and it’s whether or not you are interested in listening.

The title of this chapter came from a man I met only once, on a beach in the Florida Keys. A simple encounter asking this stranger to help a friend’s son with threading his fishing pole. As my friends son had been inside the condo we were staying at for about two hours trying to get it done, I offered my assistance, which honestly wasn’t much assistance as I have never done it before myself.  So, I merely went outside to the beach and asked a stranger for help and of course he was glad to help. I told him I would go and get the boy and have him bring the fishing pole outside. Upon returning to get the boy, he was so frustrated and still determined to figure it out on his own, (with the sun rapidly fading into the sunset, in which cut into his fishing light) he didn’t want the strangers help.  With my tail between my legs, I went out and thanked the stranger and told him the boy was determined to do it on his own. We struck up a conversation after my apologizes and I was so glad we did. This stranger asked me what I did for a living; I told him and advised that I was also a writer. He seemed impressed. Our conversation instantly turned to children and I told him I had two daughters, and a grandson. He instantly said “You have what I want” I thought about that for a minute and asked him what he meant. He simply said “I have been a good person my whole life, I worked hard all my life and the one thing I want to be able to see is my daughter have my grandchild one day, I deserve that much out of life” Those words stopped me dead in my tracks as he continued on to tell me  that he has a rare form of cancer and it has spread from prostate cancer to in his blood now” That he is there on vacation as a break from the treatment and at this point in his treatment he was at the end of the road of ways to save his life, just maintain his life for as long as they possibly can ! ” I fought back at many of the tears as I could. I shared this moment of talking with this stranger to wonder why life happens the way that it does sometimes. Why does it have to be so dang hard on people? Why did he get to the times of his life that he could sit back and enjoy all the sacrifices he made in life to have it end with a horrid disease? 

I told this stranger that I write to give hope to people that feel that they have no hope left in their lives. I write to maybe make some difference in the life of a stranger or friend one day. I told him he had to keep the faith and fight the battle no matter how tired he gets, and discouraged, turning into encouragement with each treatment he is given. As all hope is never lost until there is no hope left for anything to give you.  I told him that he is still living now and he has to continue to live and by going on vacation and truly enjoying himself is inspirational.

When life is at its worst moments such as these times for this stranger, you can always still be full of hope if you chose to be. It’s whether or not you allow hope to shine through in your life during these kinds of tough times. Always keep hope alive in your heart and soul and who knows what may ever happen.

As for the stranger I met, he told me he was so worried about dying that he can’t even live the life that he has left to live, I hope that I inspired him a little that day and that he found some form of new hope in his life from a ten minute conversation with a stranger that spent my time encouraging him to live his life, as hard as it may be at times, because in these moments he has left he is a living and has the ability to live. I told him everything is all in the attitude and your attitude can make all the difference in the world. It can for all of us.  The stranger asked me before he left the beach that day “Can you really have it all?”  Then he said “You can never eat the whole elephant, or Can you?” I told him I was going to put this in my book, somehow and I thought how awesome it really would be to tell the story of meeting a stranger and sharing a moment with someone that needed a friend that day, just as much as I did for different reasons.  So, for this stranger I will never see again in this lifetime of mine, you gave me a story to share with the world, that maybe that can determine in their own lives whether you can eat the whole elephant or not! A chance encounter with a complete stranger gave me inspiration and hope that day. A moment shared with someone that I will never see again, but I am left thinking about and hoping for only the positive outcome of his cancer treatment and hoping that all the days of his life he has left to live, he will learn again to enjoy them as we are never guaranteed tomorrow, any of us, but we have to live our lives for the moments we have not the moments we are anticipating to come, because no one knows their real last moments here to enjoy so why not truly enjoy them all regardless of any circumstances we are faced with in life?

I hope that my story will touch your heart. Make you see the goodness in meeting a stranger and to understand that you will never know what you can learn in life just by listening and being open to taking time to hear someone else speak. I hope you all have a good week I am looking forward to going to Emory tomorrow to meet Dr. Kooby and I will be posting on anything exciting that may develop but for now it's all about me rebouding into feeling good and getting my body, mind, and spirit ready for 6 complete days of sunshine and paradise that I have earned every single second of !!

Don't Cry for me...Pray for me! 

Blog # 88.... Clinical Trial, Recovery, Chemo, and Mexico .. What a mixture!

I am finally recovering from the third round of Y90! This time was a little tougher than the last two times. The nausea has been horrible. I think I hugged the stupid toilet in a week and a half more than I have all the others years of my life put together.

 I was recovering from the nausea and then I did chemo and it just fired it all back up again. It wasn't until a friend from facebook (I have never met), offered me some essential oils, and they worked. I must admit I was skeptical but I am glad that I used them because they made me feel 100% better, I now can say I highly recommend them! I will be posting a link to her website on my blog.  Things are getting better I just still have the constant back pain. I think its  a nerve not really my back, I had an X Ray and nothing showed on there, I guess it's just something I am going to have to live with whether I want to or not. 

I have chemo again tomorrow (which I am dreading) I hate feeling bad... The treatments of this disease are like a roller coaster, I get the treatments, feel bad, start recovering andfeeling better, and then it's time for another treatment. I feel like it's a roller coaster ....merry go round all in one. It's really all about the high's and low's... Hating the the low's and loving the high's! The good thing about this chemo treatment is it going to be the last one before I head on my girls trip to Mexico. I am determined to not feel bad in Mexico. I will have a two week break and hopefully I will be recovered completely from the Y90 and the chemo and able to have a good time in Mexico!  This trip has been booked for 2 months, when we booked it I thought the time would never come and as of today we are 17 days from boarding the plane to paradise. I can not wait. I couldn't even express in words how excited I am, if I had to do it!  I am going with 4 other amazing ladies and we are going to relax, eat, have a drink or two, and truly dance the night away. I am so ready! 

Last week was my brother, Greg's and my little daughter Evan Raine's birthdays. On Friday night I got all dolled up and went downtown for a nice dinner to celebrate my brothers birthday and had my first glass of wine in almost 15 months. I sipped the wine over a couple of hours, I knew that I had to be careful because I am still having to take my pain pills at night (especially if I go out somewhere) because I would not be able to sit at a table for more than 10 minutes the way my back feels. 

It felt good to get out and go celebrate my brothers birthday, something I use to do all the time without a thought of anything and now days it's a treat if I can feel good enough to go. That makes me sad a little because I see how much my life has changed with this horrible disease, ways that you don't even really even think about because I don't feel good enough most of the time to do all the things I use to do. It's okay... I would rather be home resting so I can do more things in the future... than to go and sit there miserable and wishing I was home. I listen to my body now, and I don't try to overdo what I know I can not overdo. It's my new life being a cancer patient and honestly as long as I am alive than I am happy with whatever choices I have to make to get me through to the next day! I didn't make it out to the club with everyone else at the party, I wanted to go but I knew the next day I had 17 kids coming to my Evan's birthday party and I really need my rest for making sure her party went as smooth as possible. I didn't have her party at my house, I had it at her gymnastic's place and she was so happy. She said it was the BEST day of her life. It was chaos but worth every single smile on her face. She had a blast, all the kids had a great time and that hour and a half that I spent days preparing for was worth every single dollar I spent to make sure she had a great day! 

While I was preparing and at her party my sweet friends, Linda, Kim, and Kenny spent 6 hours out in my front yard, clearing out flower beds, pulling weeds, cutting down tree limbs, planting flowers, and mulching. They did an amazing job, and would not let me pay them a dime. I wanted to cry I am so grateful for friendships that are so loving and giving. I could never repay so many people that have extended themselves out to me in my time of need. It's amazing. I have always been the giver so to receive feels amazing...

I still haven't heard anything from.... President Obama, doesn't surprise me... But... there is a huge development.... The Walton Tribune has agreed to write my story and help me in trying to get all of these outstanding claims paid to Newton Medical Center. I met with the sweet reporter, Meagan Hurley, Staff Writer..... She contacted both Coventry One and Humana. Coventry One really hasn't cooperated as of yet but Humana, immediately has contacted me and has taken charge of getting all of my claims back reviewed and being paid. The hospital thus far has received $40,000.00  considering all the claims they paid last year.... and only paid $10,000 if that. $40,000 for two repaid claims makes me very happy.  I have pushed this issue and been in contact with the head of billing at Newton Medical Center that told me most patients are not as diligent to help them get paid. With tears in my eyes I told her, "without Newton Medical Center and Dr. Chamsuddin, I would truly not be alive and they are owed the money and I will fight until they are paid within 100% of their contractual agreement". She said that they will be going after Coventry One next... things are happening, They are getting paid and honestly that is all I wanted to see happen.

 I have been given another chance at life and there is no price tag on what mine or anyone else's life is worth. My story comes out in the Walton Tribune this Wednesday 4/22/2015 I am excited to see it in print. Great things are happening and I know that what is right is right and everyone should be as diligent in making sure the right things happen. I have heard a million times I should not have to be dealing with this when I am sick, it's my life and they are my bills ... who else should be doing it? 

I'm at a good place. I am not feeling 100% and like I said earlier I have chemo again tomorrow and I know it's going to kick my butt, I prepare myself for the side effects I would say you get use to them but there is no way to get use to feeling so bad. I hope it's better that most of the Y90 is now out of my system and it's easier than the week before last. It's going to be what it's going to be and the one thing you learn to do is... deal with it!  

Things have been pretty quiet this past two weeks with all the other cancer patients I know.... we are all just doing our thing to do what we can to rid our bodies of this nightmare. I told someone yesterday I am tired of it and ready to pass the cancer torch, to bad we can't do that.

 I am meeting with Dr. Kooby at Emory Clinic on May 1st. He is the surgeon that Dr. Chamsuddin went before the board with about my case. Even though I am not a candidate for the resection of my liver he still wants me to meet with him, there is a clinical trial out of Brooklyn, New York that I am interested in hearing about and also another chemo that might be better for my cancer. I am open... as I have been since day one of this disease. I will leave no stone unturn trying to beat this monster. I am not afraid to try something new.... if I was.... I would not be at the great place of beating this cancer that I am at. I am afraid but being afraid doesn't hold me back when it comes to my life. I just go into the new treatments knowing that I am doing all I can and that is all I can expect for myself. So many people tell me "I could not have done what you have done" Really? You give yourself everything you have to live and that is all you can possibly ever hope to accomplish in life.... So there is no thoughts or concerns that go into whatever it is that has to happen to make you live you do it, you grin and bare it and do it with all of you that there is to give to make it happen. 

I want to live and I will never ever give up a second I have on this earth to do what I can to make that happen. I owe that to myself, to my friends, to my kids, and my siblings. You find strength you never knew you had, when you have to have it. 

I cry... I get scared... I scream and yell... I cuss... and I do what I have to do to save my life. It's not easy and I get so sick and so down at times. I have had times that I wasn't sure I was going to make it through all the pain. I remember calling Dr. Chamsuddin one time and I was crying like a baby and I said "I can't do this. I feel so bad I just can't do it" he replied "stick to the plan Christy" I needed to hear that.... I needed reassurance from someone with a lot more knowledge and dealings with cancer than I had. I needed him to push me and he did.

 He may have shook his head and thought why is she calling me... I called because we are a team... We have been a team in this process... He gets frustrated with me and he thinks I talk to much but in my heart I know for his own reasons he wants to save my life as much as I want him too and for that our bound in my mind is a very strong and special one. He is my friend. He is a great doctor and a great man. He cares and it's not just about me he cares about all of his patients, I am sure that most are not as in your face as I am but that's me and he knew that from the first day he met me and he still decided to treat me so that's his problem... Just kidding!  He has done amazing things and I am forever grateful to have my life back and I hope that he knows that his miracle abilities are greatly appreciated by me and so many people that know and love me. 

The morning of my daughters birthday it hit me.. The tears rolled down my face at the thoughts I had so many times that I might not have been here to celebrate my little girls 7th birthday and I was there ... I have a letter that won't get ripped up but will be saved in a special place because it's one less letter she will ever receive because I didn't make it through this horrible thing called cancer. I rejoice in knowing I am going on my 15th month 3 months longer than anyone even expected me to live and I am free of all the old tumors that were originally there trying to take my life and hoping and praying to God all the new tumors are gone and nothing new will show up since this last Y90 treatment. I have spent so much of my time anxious to have another scan in hopes to be in remission that right now I am just enjoying the nothingness of things being done and just recovering mentally, physically, and emotionally from all I have been through. Not focused on what could be but what is in the moment and that feels good. 

Don't cry for me... Pray for me... Know that through your inner strength you can do anything you set your mind to doing!  Thanks for reading and sharing my blog. 

Blog #87 Emory, MRI, and Hope for Remission

On my way to Emory to have an MRI early this morning, to see if the tumor board will approve a resection of my liver on the right side. Doesn't that sound like a horrible way to start the week? It does in some ways and yet in others it could be what gives me back a Cancer free life and how can that be horrible?

I'm very nervous as to the results. I am a control freak and traveling this journey there isn't a thing I'm able to control. I just have to "GO WITH IT" sometimes that really is just the hardest thing to do. I have all my faith in Dr Chamsuddin and if he feel this is my only option than I refuse to question it. I know he will only lead me down the road of success through fighting this 

Yesterday,  I spent most of the afternoon crying when no one else was around and just cried my eyes out. Cried because I have this disease .. I cried because I still have to fight.I  Cried for the unknown which is dumb because really there is nothing to cry about when you don't even know what you are crying for. I have to do this. I have to go lay my little body in a tube for 30 minutes while a machine spins around me making images of my body so that the specialist on a board at Emory can make a decision about what can and should be done with me. This Cancer is nasty. It's slow growing but regardless it's growing inside of me as we did the Y90 I pray to God got it all... but the issue is this beast just wants to come back! It likes me. It like attacking my body and as I work so hard to fight to get rid of it apparently it's  fighting just as hard to stay just where it is! 

I'm okay. I'm recovering well from the last Y90 a few days ago. It takes a little time and my body needs rest and it's really hard to rest good when you are taking steroids ...those just seem to jack me up. I only slept a few hours last night. My mind kept wondering all over the place. I want to just tell it sometimes to just stop thinking to give me break! It doesn't work. 

It been a tough week I loss 3 people I know that had Cancer and were fighting for their lives. I hurts every time I hear about anyone passing from this horrible disease but it doesn't do anything less than make me want to fight harder.

 

I'm not a quitter I have never a day in my life been a quiter and I'm not about to start now just because the battle has gotten tougher. I have the strongest desire to live inside me. I want to see my little girl grow up. I deserve this. Everyone deserves this and like so many before me and so many that will  be after me I will fight my ass off to the bitter end. 

I have things I want to do and I am hoping that I can see those things through to the end of success. 

I'm almost there to get this done and I've put my big girl panties on and I will walk into this appointment as confident as I always do and know no matter what I feel inside I have a mission to accomplish and this is just another step in my ultimate recovery. 

The MRI was a success. I have never had one before ...so I really didn't know what to expect. I knew it couldn't really be that different from a CT Scan or a Pet Scan. I was taken back immediately, that's the plus of being the first patient of the day. I had to change into a hospital gown and a huge pair of hospital pants.  I laid on a the scan table and was given an IV for the dye that would be administered during the test (another thing I wasn't expecting) the machine is weird. It's like a tunnel you are pushed into and you are given huge headphones I wasn't sure what those were for until I was in the machine and the buzzing and machine itself was incredibly loud. It wasn't bad in and out of there in less than 20 minutes. I left the hospital thinking... well lets say not thinking and didn't get a copy of my disc. Once I got back to work Dr Chamsuddin called to remind me ( I'm not sure he thought he had to remind me but I think he thought I would have been there already. Because he knows I'm on top of it. I'm there before he even ever calls to see me) so I had to get  my driver(Chris) to come back and get me. I couldn't drive  because I have to taken a pain pill as my back hurts and I'm  still recovering from the procedure, Chris took me back down to Emory, I waited an hour, and off we went to Covington to drop it off at the hospital.

  It's there and when he gets the chance he will view it. It's been a long day and now I'm home laying in my bed resting and trying to recover before having to go and do chemo on Wednesday morning. Tomorrow should be a full day at the office, at least I hope so.   

A friend of mine texted me today and I thought I would share what she said about Dr Chamsuddin:

He is everything I would want in a doctor.  So glad you have him in your court!

Don't cry for me... Pray for me. Pray that the best decision is made for my future because I plan on living a long time and fighting for every day I have if I have to!!!