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 # 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!!!