It’s my 100th journal entry though (in Caringbridge not in the blog). Yeah!!!!!
And all you get is an update about my Houston trip.
I didn't take any Houston pictures so here is a couple of our trip to the Cidar Mill the weekend before.
My nephew, Drew came with us too. He loved looking at all the dogs people had there. They are getting big so fast.
Trips to Houston and MD Anderson are never uneventful. Never. Well, I got to the airport at 1:00am and I was tired. As I got into the rental car building I noticed that half of the car rental places were closed. That was weird. So, I went to the Avis counter and asked for a car. She asked if I had a reservation and I said no. Then, she looked at me like I was insane. She said they didn’t have any cars. Then I went to Alamo and National and they didn’t have any cars. Then Dollar and Budget and they didn’t have any cars. There were people who even HAD reservations and they didn’t have cars for them. So at the Hertz counter she explained to me that because of Hurricane Ike all the rental cars were gone because volunteers fly into Houston and drive to Galveston to help with the cleanup. All the rental places stopped taking reservations 4 days ago. No rental cars anywhere. So I had to wait for an hour and take a cab to Paul’s. $60 later I was waking Paul up at 2:00am to let me in, and then also letting him know I needed a ride to MD Anderson in the morning. He loved me.
I spent the entire day at MD Anderson getting Chest X-ray, Bone scan and blood work. I moved my CT scans to the next day, but I was stranded with no car. I walked about 3 miles to some shopping in Rice Village (love the shopping there) and then proceeded to walk to an Enterprise. Even thought they told me all day that they didn’t have any cars I just happened to get there when someone was dropping off a car and I scored. CT scans were the next day and then I went back to Paul’s and sat by the pool and then went on a run around all the mansions around his house. Lot of Oil money in Houston and they love their huge houses.
The last day was the appointment day where I get blood tests every couple hours all day and where I get results. ….and here we go….first, my blood test went down from 394 to 366, so that is good. Not great, but good. The chest x-ray didn’t show anything (good). All my blood work was fine. The CT scan showed all the same spots as before. Some were a tiny bit bigger and some a tiny bit smaller. When it is that close they call it stable because they can cut it different spots for the pictures and the cuts are 3-5mm and none of my changes were more than 5mm, so it could just be cut in a different place. The bone scan report said something about a new spot on my right hip. That doesn’t make sense because I have always had a spot on my right hip. My doctor needed to get clarification that it wasn’t an entirely new spot because if it was, I would get kicked off the study because I would be showing progression. (tumor progression) I guess that the last bone scan didn’t show that spot and now it does, so they consider it progression. I don’t know what to think because I know that it was there before.
The protocol of the study says that if someone has progression on the study (as I do) then they either have to stop the study or increase the dosage. I have no option to keep trying on the same dose. My doctor is skeptical of the “progression” in my hip, so she didn’t want me to stop the study and I feel the same. My blood test went down and I put a lot of weight on that as well as the fact that the other spots are all the same. It doesn’t make sense that only one spot would grow and all others hold still. So I decided to stay on the study but on the increased dose. Only thing about increasing my dose is that I go from taking 100mg to 400mg twice a day. 4 times what I did before. Guess they are worried that my blood counts will go down on this dosage, but we’ll see.
All and all, I really don’t like these visits. It always serves as a reminder to me about my situation. I don’t like reminders. They bring me down. I got this really cool hat for $5 at Urban Outfitters. I was so excited that my hair is long enough that I can wear it for style and not look I wore it to cover up my bald head. I wore it all around Rice Village (Rice University shopping area) and I felt great. Then, I went back to MD Anderson with the hat on and this lady says “that is a cute hat” I say, “thank you”, and then she says “Too bad you need to wear that. Hopefully soon, you won’t have to wear hats anymore” I just stood there and didn’t say anything and thought to myself “I don’t NEED to wear this hat. I want to wear this hat because it’s cute.” See, that’s the thing about cancer centers. Everyone there assumes anything on your head is because you lost your hair. If you have short hair there, you are considered a cancer patient. When I wore a wig people would ask me who colors my hair outside of cancer centers and in cancer centers people would ask me where I got my wig. Nothing gets by them.
THEN, the study nurse proceeded to tell me that the sponsor said that they would only be paying my travel expenses up to my last trip and not even including this trip. WHAAAAAT!!!! And here I went again. I said…. “No Way. She told me that sponsor said they would for sure pay for all of my travel expenses. That weighed heavily (not true, but helps my argument) into my decision as to whether I would do this study or not. I decided to do the study because my expenses were covered, and now that I am two months into it you are telling me my expenses aren’t covered???? You can’t do that to someone. This is my life you are messing with. I can’t just start and stop drugs because people don’t tell the truth. I can’t afford this if you don’t pay for my travel. I also can’t afford to stop the study if it works.” So, the study sponsor is the person behind all of this. I don’t get to talk to the sponsor but boy would I like to. I am trying to get the study nurse to see if there is any possibility for me to do so. Anyway, they are trying to get in touch with this person and see if there is any relief for me. I have spent over $3,000 so far on all my 5 trips to Houston. I am hoping to get most of that back from them (since they are now claiming that this trip isn’t covered). Here is to hoping that they don’t screw me over. At the same time I have to pay back $5,000 lump sum back to short term disability because SS disability paid me first and now I have to pay that back. I always knew the money wasn't ours to keep, but I could use that $3kfrom MD Anderson about now. Money crunch.
Paul got to go to the last blood draw with me because he picked me up there. It was funny. He walked out of the room while they had the needle in my arm. No one likes to be around that. I was joking with him and Kevin about it and Kevin told Paul, “there is no shame in being squeamish around needles.” He's still not comfortable with it after all this experience. I did get to show Paul how nice MD Anderson is. There is a lot of Granite all over that place. I wonder how much research money went into the building. Granite walls, huge granite fountains, huge aquariums everywhere….Hmmmmmm….
Well, as you can see, the big 100 item list is not here for my 100th journal entry. Now, I am listing 101 things for my 101 journal entry. It’s about done, so I’ll put it up in the next couple days. I think we’re going to Cedar Pointe this weekend and I am sooooooo excited. I am such a little rollercoaster addict.
Excited to get home and go to Cedar Point.
Talk to you all soon!!
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