Tuesday was a good day
Tuesday I met with the dream team. This is the team that I am hoping God put together to save my life. At 1:30, I had my first meeting with my interventional radiologist. He is very young (36) with a young daughter. For the record young doctors, when you have a rare disease, make me feel better than old doctors. They just get it. They are edgy, risky, and understand what it means to not want to leave your children behind. They are not hardened by failures. They don’t just phone it in and look at you as a stat. They see a father. They understand when you tell them that you would rather die by being overly aggressive in 18 months. By pressing and fighting to get the tumors small enough to just maybe be lucky enough to have a liver resection(instead of dying at 24 months without trying). They understand that six months is irrelevant in the grand scheme of things. When you look at what is going on in the world of Cholangiocarcinoma the standard of care for my stage is chemo first then some sort of radiation. I do not know if I have even heard of doing them at the same time in any of the CC chat rooms. This Dr. wants me to start chemo Thursday and get set up for y-90 radiation at the same time. This from what I can tell is NOT the standard. This is risky.. This will make me very sick… We are going to meet with Dr Hamrick tomorrow before I start my chemo. We are going to get his opinion on doing both chemo and radiation at once. Then we will decide.
Next we met with a liver transplant/resection doctor. He is one of a 3 person surgical team in this department at Piedmont. These guys come highly recommended and they are incredible. At one time we had 6 people in the room wanting to meet me. We thought that we might be having a party. For one thing it is amazing that this surgeon took his time to meet me. I am not a candidate for surgery at all right now and no other hospital thought there would be any point in having me meet with a surgeon. This guy truly wants me to get to the point that I can have a surgery. That means I have to have the cancer out of my lymph nodes. At that point, one of the guys on the 3 man team will take on my liver. If they think there is the slightest chance that they can help me, they will do surgery. This guy got it! He got that I want to go out guns blazing. If I am going to go out… I am going to go out fighting. His words were, “you are a 38 year old otherwise healthy father of 3. We are going to throw the kitchen sink at you”. Thank you God! That is what we have been looking for.
So even though it is scary to go to the doctors and see the looks on the faces, we did not get that from Piedmont Hospital. They saw me for who I am and not as a stat. They were straight up about my challenges, but they told me not to give up hope. That is what Carrie and I needed to hear.
The prayer request now is that my cancer will react positively to the chemo that I start tomorrow. I will be going every other Thursday, and the treatment will last about 5 hours. I will be learning how my body deals with the chemo as far as side effects. Then I will be scanned in 2 months to see how the cancer has reacted. Two months is not long enough to make great progress, so it will be considered progress if the cancer has not grown or spread. BUT, lets pray for shrinkage and especially that it kills those cells in my lymph nodes.
I want to thank everyone for your love, support and prayers. We are blown away by the kindness. I keep asking Carrie, “Where have I been? I never knew that people were this good”. So thank you for being there for me. God has given me the strength that I need to make it through each day, and I thank Him for that every morning and every night.