It has been some time since we have given an update. I think that is because we have fallen into our “New Normal”.
I remember when Trav was first diagnosed and I was reading Cholangiocarcinoma.org the seasoned vets on the discussion boards said that life would get back to normal in time. They said that we would learn to LIVE with the cancer. I COULD NOT believe that two months ago.
I remember the first day that we heard the word Cholangiocarcinoma.
We came home from an unexpectedly horrible doctors appointment where the PA who we never met gave Trav that horrible diagnosis. Travis went downstairs to see Trey (our almost 6 year old) where he was watching a cartoon. Trav held Trey on the couch and we heard Trav crying a cry that would certainly frighten a little boy. It wasn’t crying. It was pain filled weeping. I remember thinking that Travis would not be able to be with our kids again without crying in that way. I thought that our kids memories of their dad would be filled with tears and pain.
I REALLY DID think that was how our life was going to be from then on.
The funny thing is that Trey was with my mom this weekend and she said that he was talking to her about crying. She asked him if he had ever seen his mommy or daddy cry. She said that he thought for a bit and then said, “actually, I have not”.
Actually he has, but apparently it did not scar him or even stick with him for that matter.
I also remember going to Whole Foods with my best friend Kristina (our beautiful blog writer) the day that we went to Emory (another horrible doctors appointment). We were standing at the check out when the clerk asked how we were doing. We both looked at each other and I felt like I wanted to tell him about Trav’s cancer. I thought that I would always want to tell everyone about Trav’s cancer. It was SO BIG to me that everyone should know. Well, it is really big and I do want people who are in our lives on a regular basis to know. It is such a huge part of us, but I don’t want to tell the guy at Whole Foods anymore.
Your welcome guy at Whole Foods!
Many of you can probably relate to the fact that nothing forces you into reality like “starting school”. Oh, so much to do and so many things to remember at the beginning of the year. All of the orientations and class meetings can be a shock to the system after the summer break. But, it is so nice for us to get that routine back and feel like we are semi “Normal”.
Chemo weeks are always a little harder than the off weeks. Trav starts to get a little grumpy the Tuesday before his Thursday chemo. He really doesn’t like chemo day. Even though he is grateful for it… he still doesn’t like it. He is such a trouper, making friends with the other patients and making the nurses laugh. After 8 chemo treatments he has learned that it is best to come straight home from chemo and go to bed. He does get really tired from the treatment, but if he gets some good sleep right away he feels so much better.
I had a rough couple of days this week. It is impossible not to think about all of the “what if’s” of this ugly disease. Trav actually says that it makes him feel good when I am sad because it makes him feel loved:). I get that! How hurtful would it be if you were diagnosed with an incurable disease, the docs were telling you that you were going to die, and your spouse didn’t seem to care. It’s not an easy road and as Dr Hamrick tells us over and over “this is a marathon and not a sprint”. Some days are just tougher than others.
For the most part we are plugging away in our “New Normal”. We hang out a lot as a HAPPY family. Trav spends a good amount of time out on the golf course:). I spend a lot of time at Whole Foods… This leads to a little rant, sorry!
Seriously, I am going insane with the diet aspect of cancer. I am trying to feed a guy who lived on Mc Donalds cheese burgers and Diet Cokes before he was diagnosed. I have guilt over how he eats. How does one have guilt over how another person eats? I don’t know???… but I do. We certainly have not been consistent with anything except juicing and green smoothies (which I am very proud of him for drinking). I honestly don’t know what to do or what I am doing right or wrong, but I do know that we are spending a fortune. So there! That has to count for something:)! Right? I used to buy clothes for my daughter and now I buy beets and kale…almost as fun:)! Don’t get me wrong here. I don’t try to force Trav to eat healthy. 50% of the time he feels like he really wants to eat healthy and 50% of the time he doesn’t care and just wants to enjoy life. I want to do what he wants to do and I get so confused. It is very difficult because most doctors do not put ANY stock in changing your diet, but if you read the books that I have read and do the research that I have done you will think differently. UGH! ARGH! I could go on… But I won’t!
We are living life with all of the good and the bad that comes along with Cholangio. Today we are waiting for an updated CA19-9 which should be available sometime while we are at chemo. We are praying for a big drop of course. Our last number was 3940.
I really want to thank everyone for remaining faithful in your prayers. We never feel like we have been forgotten. Even after almost 5 months the support from our friends and family is overwhelming. All of the notes and texts and meals and hugs help us get through our days like you can not imagine.
We will update with the new CA19-9 when we get it. I hope to be delivering great news soon!
Love to you all!