Hope

We are getting ready to go to San Francisco on Wednesday. We considered leaving on Tuesday because it is so hard on me to drive. I just can't stay in the same position for very long before I get uncomfortable and very sore. I have to keep moving and that is hard to do on a road trip. We have been so blessed to have friends who are tuned in to our every need. We have someone willing to fly us over from Fallon to Oakland, where we will get a car and drive to our appointment. We don't have to leave Tuesday and that will make the trip so much easier! We will meet with the surgeon and we are hoping for good news. Good news would be that they say they can resect my liver (take part out so it can grow back). They wouldn't do it at this appointment, but I am packing a bag just in case -- you never know. If we do not get the news we are looking for, we will see what other aggressive options are available.

I met today with a friend of a friend who is a spokesperson for a cancer center. This man is a two-time cancer survivor who gave me the advice that you have to be your own advocate in the treatment process. He gave me some good suggestions on how to proceed in my treatment. I will also be getting in touch with a relative of a different friend who had the same thing as me, secondary liver cancer, where they couldn't find the primary cancer and it turned out to be primary bile duct cancer, just like me. He also had the high biliruben that wouldn't come down. He had a liver resection and then chemo and was able to have a good quality of life for quite a few years. I was encouraged to hear of these stories - they give me hope for what is ahead in my life. I am excited to meet with the surgeon in San Francisco and hope there is something they can do. If not, I will have to be my own advocate for more aggressive treament because I want to get going on this and get on with my life.

None of us ever know what surprises life will hand out. I never would have written this into the script of my life. This doesn't feel like the life I'm used to. I keep hoping I will wake up from this bad dream, but I'm pretty sure I won't. I guess this is the new definition of my life, where I hope to eat and not feel sick, sleep and stay comfortable, and have the energy to get a shower before I need to rest during the day. My wardrobe has completely changed, I now look for clothes with stretchy waists that can hide bile bags. I can't say that I wouldn't take my old life back if I had the chance, but I am learning a lot from this new life. However unexpected this turn of events is for me, this is my life at the moment and I am doing my best to learn and grow from it but not be overwhelmed by it. I can't say enough how grateful I am for my family and friends who are making this so much easier to handle. I appreciate your love, kindness, prayers, and willingness to help with things I am unable to do right now. Wish me luck in San Francisco!