In this update: Duke Trip details, vision update and stories, Treatment plan?, Joe’s graduation party, American Hero, Rachel Chaney Wedding
I should have written about our trip to Duke, but was just being lazy. Other than the bad news we had a great time. I love to spend time with my girl.
Eileen and I got to Raleigh early on Sunday morning. My friend Ken O’Berry picked us up at TDU, we picked up his fiance Jean and headed to an art museum for a great brunch. After we ate, Ken and Jean took us back to our friend’s Rob and Kim Singleton, where we were staying.
We had talked about entertainment rooms and I had described Singleton’s 100″ HD TV screen and Jean really wanted to see it.It really is quite impressive. Especially when you see Planet Earth from the Discovery Channel. Of course seeing the Packers on it would be the ultimate viewing experience.
I’m still waiting to hear from Rob if his neighbors thought they were selling their house. It had to look weird when they saw two strange couples, one looking like they were showing the house to the other. We just laid around Singleton’s house for the rest of the weekend. Here we are watching other Planet Earth episodes on the big screen.
On Sunday we ate dinner at one of our favorite places – Outback, but we always split a meal. I’m sure the servers love us. “Here come the cheapskates.” 🙂 . On Monday we decided to eat dinner at The Melting Pot where they serve separate fondue courses. It’s something Eileen had wanted to do for a while so we splurged. At first you think you’re going to leave hungry, but that could’nt be farther from the truth.
Here we are getting ready to start the most important course – milk hocolate fondue. That little tray has strawberries, bananas, brownies, cheesecake, pound cake, rice krispie treats and marshmallows. The chocolate was so good I didn’t want to leave any behind.
Tuesday morning I had my MRI and Petscan. I panicked when they said they wanted to give me an IV for the contrast, but was very happy when she said it would be a small needle and the same IV could be used for the Petscan. It was my very first Petscan, which is where they inject you with radioactive sugar to see where the cancer is located. They had to test my blood sugar level, by pricking my finger. I hate that too and tried to talk her into using the IV, but she couldn’t. I then asked her how low it has to be to do the Petscan. I was pretty sure I still had chocolate fondue flowing in my veins and thought I was in trouble. Fortunately it was only 110. After they inject you with the sugar they want you to take a 45 minute nap. Once she put the warmed up blanket on me I asked if we could make it a couple hours :-).
It took us forever to see my Duke doctor. Far longer than ever before. When he finally came in and told us that it wasn’t good news it really was a shock to both of us. How does it change this quickly? I don’t know, but it did. I asked him if he was worried by what they saw and he said they were concerned and we should change what we were doing because it looked like the current protocol was not working as well as it had. Dr. Reardon said they had a couple clinical trials we could participate in, but when we learned both would require us to start treatment at Duke and travel back to Duke once a month for the first few months we elected to do one of the regimes on our own. The plan was to do Avastin (IV) every other week and take something called VP-16 21 days out of every 28. I can’t speak for Eileen, but I was only half there for the discussion. It’s weird. Surreal. We hugged. We cried a bit. We had a short pity party – very short. Our heavenly Father still sits on the throne and He is not surprised. God is good – period. I think the hardest part for both of us is that we thought we were going to get a break from treatment and the limitations of a treatment schedule. You know, they say God doesn’t send something your way that you can’t handle. Can I just say I think God is very optimistic! and doesn’t understand how wimpy I am!:-)
As if we hadn’t had enough dessert for an entire week, Rob and Kim made their incredible homemade ice cream Tuesday night and we ate A LOT! It was nice to be with “family” and be distracted.
Thursday we went in for labs expecting to start the new regime. However, we soon found out that Dr. Geoffroy wanted me to consider a different clinical trial and needed to talk with me about it first. So we don’t know what we’re doing and won’t find out until Wednesday morning. I trust God, but I confess this is hard for me. When you feel like you have a time bomb ticking in your head you want to treat it as quickly as possible. The fact that my headaches are now worse and pretty constant makes it tougher.
My vision seems like it is a bit worse, but it’s definitely not better. Eileen is a great seeing eye wife and she is getting good at remembering not to walk close to objects so that she runs me right into them.(No, Wendy, you may NOT fill in for her!)
I forgot to mention some of the stranger vision problems I’ve had in the past. It’s only occurred a few times, but once I thought everyone had put on wigs and facial hair until I went to ask Eileen what was going on and was startled to see she had hair everywhere too. That same night everyone I looked at appeared to have a big pasted smile on their face. I looked at Eileen and asked her if she was doing it and she said no, so I realized my brain was really playing tricks on me. It has only happened twice since then, but when it does it’s bizarre. Next time I need to look in a mirror to see what my face looks like.
Friday we went to Monahan’s for Joe’s graduation party. I almost tripped and fell on Kelly’s purse and lots of shoes at the door. I’m still investigating whether Wendy had anything to do with it 🙂 Check out this sweet quilt Wendy’s mom Carol made for Joe.(sideways)
On Saturday we got to attend the wedding of our friends John and Susie Chaney’s youngest, Rachel. It was a beautiful wedding. I got overwhelmed emotionally watching John dance with Rachel.
I desperately want to dance with each of my daughters at their weddings. Eileen kept saying, “We are going to need a much bigger dance floor.” Yes, our girls are dancers and can seriously “bust a move”.
I got to grab this picture with their oldest son Matthew, who was just awarded the Silver Star for his actions on September 10, 2007. He is a real American hero and I’m quite proud just to know him. When I read the military write-up it blew me away. He lives with pain every day that would keep me in bed. God bless you, Matt.
I have been reading in Joshua lately and got encouragement from a couple different friends who are reading there as well.This verse in particular both encourages and challenges me.
“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.”
I’m expecting a miracle, God’s gonna deliver it, pray BIG!