04/23/10

Got home Wednesday from Houston. I had to go for another wonderful 10 hour day of blood draws and EKG's. Everything went smoothly. I am off the MEC meds for a full two weeks. I have what they call a "clean out" period. I'm really hoping I start feeling better since I will be off the meds for the two weeks. Since I started the MEC meds I have had horrible headaches, yucky stomach, the WONDERFUL rash (which by the way is no way near as bad as it was the first time) and I have small sores in my mouth that is causing my throat to hurt. The rash is on my scalp again which is killing me!! It itches, hurts and is just annoying! I will fly back on Wednesday the 28th. I start appointments early Thursday morning. I have blood work, EKG, more blood work for clinical use, I see the Dermatologist and also see the doctor. Full day on Thursday. Then Friday I have an Echo. I hate Echo's, they are so uncomfortable and it kind of hurts because they press do dang hard on my chest. Then nothing else until Sunday morning. I will go in for more blood work and then I will fly home. So it's going to be another long stay in Houston. My step mom is going to be in Houston with her sisters during the same time. Her sister that I have mentioned in an earlier blog has finished her treatments for breast cancer. Woohoo!!!!!!!!!!!!!!!!!!!!!!!!!!! I was going to go spend time with them that Friday and Saturday, but I found out I have the Echo scheduled on Friday so that ruined our plans. So anyone there in Houston that wants to come entertain me Saturday, I will be at the Holiday Inn on Kirby LOL. On that Monday, May 3rd I will start talking the BRAF meds full time. Not sure yet what all the side affects are, but I will definately find out when I see the doctor. So everything is going okay, all except me feeling like crap all the time.

I also want to ask for everyone to keep the Rich family in your prayers. For those that don't know Bruce passed away this past weekend. I found out early Sunday morning and it just devistated me. He was the sweetest man and i am going to miss him and our talks. Everytime he would come in the office we would always spend time to update each other on how things were going, what treatments we were going through and let each other know of any new treatments we had heard about. It was so nice to talk to someone that was going through the same thing because we truely understood how each other felt. I didn't get to attend his funeral because I was stuck in Houston. Even though I was not there in person, my heart and my mind was with them.

Update

Just thought I'd give a little update. I started the new trial last Monday, April 5th. I was feeling good and everything was going smooth until Sunday. I think the meds finally hit me and I haven't felt good since. I have a pounding headache that will not go away. I've been nauseated and my whole body just feels kind of weak. All these are side effects of the drugs, so there's not much I can do about it. I have other meds to help with the nausea and headaches but they don't seem to work very well. I tried to go back to work yesterday but ended up coming home. I'm hoping all this will pass when my body gets used to the meds, I hope. Also so far no rash. I'm not sure if that's a good thing or a bad thing. I fly back into Houston on Sunday, to be there first thing monday for another long day of sitting in the little rooms so they can take blood and do EKG's for 10 hours. Not looking forward to it at all. I will be there until Wednesday. Other than that Brayden and David are doing wonderful. David is working his butt off and Brayden is soooooooooo ready for summer. Just wanted to give everyone a little update.

It's a go!!

Here goes clinical trial #2!! All my test looked okay so I get to start the trial. Bad thing is the therapy rooms are all booked for tomorrow so I can't start until Monday. It's too expensive to fly home and fly back so I'm stuck! David went home today, and mom flew in. Wish I could have gone home with him. I miss my Brayden :-( Gonna have to Skype him and David tonight. I love being able to see him and talk to him at the same time. So much better than just talking on the phone. Thanks so much Amie for introducing me to Skype. I know I'm a little behind, but I do live in Colorado City. Were always the last to know lol!! So I will go in Monday to start. All I gotta do is take pills. But the first day is gonna be a long day. Gotta stay there for 10 hours. They draw blood and take EKG's all day. It's a looooong day of just sitting there. Think the lap top is gonna go with me. One of the side effects of the drug is the horrible rash. I'm still clearing up from that crap and it's about to get bad again. I just hope it's not as bad as last time. Only time will tell. Everyone keep positive thoughts about this drug. It's gonna work!!!!! It has to work. My scans were as expected. The tumors have grown and there are new ones on my lungs. But it has not spread anywhere else, thank goodness. The CT scan also showed a big cyst on my left overy that they are wanting to send me to a Gyno up here to have it looked into further. He used one of those "doctor" terms while describing it. Pretty much said it needs to be looked at. Yay, wonderful. One more thing for me to stress about. I know it will all be okay, but until I know for sure I can't help but think about it. That's about it for now. Just wanted to give everyone a quick update. Hope everyone has a wonderful Easter!!!