I’ve flown over 100,000 miles for five straight years and consider myself to be a very experienced and knowledgeable flier. When we got to O’Hare on Saturday I confidently walked us to the first class line at security and realized we had stuff in the suitcase which required it to be checked. Rookie. When we came back I sent my backpack through and walked around to get it. Unfortunately I forgot to remove my laptop. The TSA lady was not happy. In a mere six months I had become a novice. Eileen pretended she was traveling alone – until we got on the plane where she didn’t have a choice.
In case you didn’t already know this, you can click on any pictures I include to see a larger image. I’ve been making them smaller to limit the size of the email version of this that I send out.
It was great to see the Singletons again and lots of fun to play Taboo with them both Saturday and Sunday evenings.
The guys won a nail-biter tie-breaker Saturday, but Rob’s parents joined us Sunday and his mom, who said she wasn’t any good, almost beat us single-handedly. I really don’t have a problem losing, but I do not like to play with people who lie 😉
Sunday they took us to an amazing Farmer’s Market and we learned about different strawberries. I liked the camerosa better than the sweet charlie and chandler. Much better texture.
I must have sampled more than 20 strawberries, at least. The peaches, tomatoes and blueberries were also very tasty, as was the bread.
Our appointment at Duke was at 8am. When the first nurse took my vitals she commented that she really liked my shirt. I said, “Kohls”. No response. So I said, “Do you have Kohls here?” She replied, “Sometimes.” I almost laughed out loud, but recovered and said, “I mean the Kohls store”. “Oh, yes, we do”, she said 🙂 Laughter is good medicine.
When the second nurse came to take my blood I told her I had fainted once and she said “Don’t do it today, sugar, because with all the press and media here for Teddy Kennedy we’d never get you to the north to treat you.” That was the first I knew Ted Kennedy was there. I would have liked to say hi to him, but we were both a bit busy. You know if Ted Kennedy’s doctors are sending him to Duke, then Duke really is the best for brain tumors.
I told the nurse she must be good at drawing blood. This has usually gotten a good response from others in the past, but hers takes the cake. She didn’t miss a beat and said, “I’m all you got, honey.” These guys are a regular vaudeville show 🙂
I thought I was going to meet with a Dr. Reardon, but was very happy to see Dr. Vredenburgh – Dr. V.
He came in with a big smile and right away said, “Wow, your scan looked fantastic.” I love this guy. Two of my big questions were what the pathology was on my unstained slides and whether that would change my treatment regimen. He said the MGT percentage was less than 20%, which was good, and he thought we should add CPT-11 and Avastin and get aggressive with my treatment. This is exactly why I chose Duke, but I knew this was going to be a big change. However, the first obstacle is getting UHC to pay for them. Neither CPT-11 or Avastin are FDA approved for brain cancer and they are also expensive. I’ve been told Avastin is $30K/month! Pray that UHC will pay for me to take these drugs.
Though this is what I wanted the fact that these new meds must be taken intravenously has always concerned me. I asked if I needed to have a port installed, but was relieved to hear Dr. V strongly encourage me not to – no problem 🙂
I got to meet my new nurse, Bonnie Goodnight. She answers all my questions (at least she tries to), like “Why is my head and eye hurting me?” and “Can I stop taking decadron?”. She handles 450 patients and is glad the rest aren’t like me. Well, she didn’t say that, but I could tell she was thinking it. Little does she know how little that affects me. Every teacher I’ve ever had felt that way, so get in line, Bonnie 🙂
Seriously, she is great, but hearing her go through all the side-effects of these new drugs was almost too much. Some are inconvenient, like diarrhea, some are serious, like death. I’d share more details, but you don’t want to know and I need stuff to write about later. Just keeping our calendar straight as to when to take what medicine, when to get this treatment, when to get bloodwork done, etc. will be hard enough.
I’ll do two cycles of temodar (28 days each) and 4 treatments of CPT-11 and Avastin before going back to Duke in August. I will hopefully start yet this week, but must have UHC approval first. The CPT-11/Avastin treatment takes about 3 hours. They give you one, flush your veins and give you the second. The day I start that treatment I also start temodar – 5 days on and 23 days off. If my calculations with Bonnie are accurate, I will have to get “stuck” with a needle only five times every 28 days. I think I can handle that.
My friend Colleen, who is a big reason I’m going to Duke, has been doing all of this so I’ll hopefully be able to learn all the details from her.
Sunday afternoon I got to walk around Rob and Kim’s neighborhood and listened to more of Andy Stanley’s sermon series called “Faith, Hope and Luck”. Whether you are a Christian or not I have to say this is MUST listen to stuff. I promise you that you will not be disappointed. Here is a link to the series, which you can still get off iTunes, but hurry because they won’t be there for long and they are just awesome and quite funny.
Anyway, I loved hearing him share about how Jesus can always relate to any of our struggles.
“For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet was without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” (Hebrews 4:15-16)
We may not always get a “yes” to our prayers, but we will ALWAYS get mercy and grace to help us in our time of need. God may not rescue us FROM our situations, but He will help us THROUGH them.
I need a miracle, God specializes in them, pray BIG!