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.
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