Why?!?!

Thought I'd give everyone a little update on how things are going. Well in my opinion right now life sucks! I just want to crawl under a rock and stay there forever. Since I can't do that I guess my house will do. And as much as I love being home, I'm so tired of being home.

So ya'll know that one of the side affects of the pill I'm taking is a rash and I was all for it BEFORE I started taking the pill. We knew if I got the rash I got the "good stuff" and not a placebo. Well I got a rash. A rash from hell!! It hurts so bad. I have it on my chest, down my back, on my face and on my scalp. My scalp hurts so bad. It just throbs. It hurts to touch it, much less wash it and comb it out. My doctors told me it would probably get worse. How much worse can it get????????? First thing Monday I'm calling. They have to do something. She mentioned if it got too bad they may decrease my pills or put me on an antibiotic. At this point I just want it to go away. How am I supposed to live like this? And this treatment can go on for 8 months. How am I supposed to have a life feeling and looking like this??? I don't want to go in public, I look horrible. I can't handle the stares and the pointing. "Hey she's the one with Cancer." YES I HAVE CANCER, do I need to write it on my forehead?? Oh wait I can't, I'm covered in a rash! I didn't choose it, it chose me. And there's not a damn thing I can do about it. I just wish it would go away. Why did I have to get one that doesn't go away. It's going to be with me the rest of my life. I'm tired of feeling tired, I'm sick of feeling sick. I'm nauseated all the time. I feel horrible about myself because I've gained so much weight. Oh man it just sucks to be me right now. This is just so hard to deal with. I have my good days and obviously today is not one of those. If I didn't have such wonderful family and friends beside me there's no way I could go through this.

Latest update

So after a full week of being in Houston we made it home yesterday around 7 o'clock. That was the longest week ever!! We drove up there Monday because I had appointments starting early Tuesday. I had blood work, CAT scan and x-rays. Then Wednesday I had EKG, Echocardiogram and I had to get my eyes checked. Let me tell you getting my eyes checked took FOREVER!!! 3 hours to be exact. 15 minutes of this was the actual exam the rest of it was sitting in the waiting room with my eyes dialated. By the time they called me back I hadt he worst headach. But the good news is my eyes are find. I have 20/20 vision and they saw no kind of eye disease. Next day was my MRI bright and early at 6:30am. Got that done then headed for more blood work then went to see my doctor. Scan results were good. The main tumor has only increased in size by a tiny bit THANK GOODNESS!! Everything else was clear. While I was there they took one of the spots off me that has popped up. I have several of them that is the cancer that came from the inside out. So I got 5 little stiches with that. They are using it for research purposes. So after all this they said all my test were good and that I qualify and get to start the trial. So downstairs we went. David and I got put in a little room. Spent the next 8 hours in there. They started with EKG's. Did I think 3 of them. Then they took blood, then they finally started my CHEMO. I can tell you know CHEMO is a breeze compaired to the horrible IL2 treatments I did. I was really nervouse because it was something new and I didn't know what to expect. It took about an hour for the chemo to finish. We just sat, well I laid and watched TV. I started getting nauseous so I took some of the meds I had for nausea. Didn't work so they gave me something in my IV for it. Im not sure what did it, but something make me so sleepy. I couldn't keep my eyes open even if I tried. Poor David had to sit there and watch TV while I snoozed. So in all the chemo wasn't bad at all. We got back to the hotel around 11:30 that night and I was out before my head hit the pillow. We got up around 9am to get ready to head home. I was so glad to get home. I missed Brayden and was so glad to see him when we finally pulled in around 7 o'clock. It was a long week, but we made it!! So right now I'm taking the pills, three of them twice a day and I get a dose of chemo every 21 days. I have to travel back to Houson quit a big the next month or so for check ups also. Let me tell you airfare is gonna kill me! You know the earlier you book the cheaper it is. Well booking 5 days in adance you pay an arm and a leg. I will get my scans done again on December 2nd. We will find out then if the treatment is working. Physically I'm doing okay. I have been nauseated and just really tired. Other than that everything is going good. I'm hoping the nausea goes away soon. That's all I can think of for right now. I'll keep everyone updated as time goes on.

Chemo here I come!

Just got off the phone with the clinical trial doctor and they are getting it set up so I start my first dose of Chemo on Thursday (10-22-09). WOW wasn't expecting that. I'm really nervous now.

New Treatment

What a day!!! That’s all I can say about yesterday. I was stressed to the max! I don’t know why I do this to myself but it just seemed like everything was not going right. So my day started bright and early at 3:30 am. You know it’s early when your dogs look at you like your crazy because you turn the light on and disturb their sleep LOL. I got to the hospital yesterday around 9:30. My appointment wasn’t until 11am but I thought if I got there early I would get in early because I was expecting to just talk to my doctor and the lady that’s over the clinical trials. WRONG!!! I sat there until noon before I got called back. The waiting area was so packed!! I have never seen it like that before. I talk to Dr. Kim about the Clinical Trial he wants me to do. First of all before you read what I’m about to write and think “Why in the world is she participating in a clinical trial??” let me explain why. I have done everything there is to do that is an available treatment for Melanoma. Remember there is NO cure for Melanoma. So now all I have left to try is the trials. Some of the trials that are out there have proven to work. Like the Plexxikon trial they are wanting me to do. There is another patient similar to me except her tumors were much larger and now after she did the Plexxikon trial there are no signs of any cancer on her lungs AWSOME huh!! This is why all the treatments I will do in the future will be trials. So let me explain the one I’m about to participate in. It’s called the AZD6244 trial (you can do a search on it and learn more). There will be two groups. One group will get the AZD pill plus Chemo. The other group will get a Placebo plus Chemo. We will be drawn at random and will not know which group we are in. So on day one I will start the pills (3 pills twice a day) and get a round of chemo. I will go home with the pills and continue taking them daily. 21 days later I will go back for another round of chemo. This goes on for 8 rounds. So it’s chemo every 21 days and taking the pills every day (3 twice a day). For the first 6 weeks I will have to fly to Houston every week for a check up. I wish we were closer to Houston. Airfare has gone up and is probably going to continue to go up since the holidays are coming up. But I have to do what I have to do to get better. Side effects are nausea, fatigue, lower blood count (which means I will be at an even higher risk of catching something and getting sick). Some of the side affects of the pill are more sensitive to the sun, my eyes may become more sensitive to light and a rash. They said the rash usually shows up on the face. They give a prescription for a cream to help with it. So this may sound funny but let’s pray that I get a rash! That means I know I got the actual AZD pill and not the placebo. The clinical trial doctor said that some of the patients that got the AZD pill did not get a rash. So the way you look at it, I will have no clue if I got the actual AZD pill unless I DO get a rash. Hope I didn’t confuse everyone. There’s so much to it I had to read over the information so many times to just understand it. David and I will travel to Houston next week. I have a slew of appointments. They start early Tuesday and go until Thursday afternoon. Makes me tired just thinking about it. I’ve also decided to “donate” some of my tissue and blood for further clinical testing. I have several spots that have popped up and they want to remove a couple of them to keep for testing. Hey if I can help them by donating a little tissue and blood to help the researchers then why wouldn’t I do it? So that’s the plan for right now. I’m ready to get started again kicking this things butt!! Thanks again to everyone for all the prayers. Everyone’s support has been awesome and I couldn’t ask for anything better.

Keep the Faith

I want to share with everyone a website that was shared with me. It's a blog about one girls journey with stage IV Melanoma. I have pretty much read everything she has wrote and everything her husband has wrote and I'm just amazed how strong she was and how courageous she was through out the years as she battled Melanoma. I can relate to so many of the treatments she went through. The radiation, the Horrible IL2 treatments. I love the way she write about her experiences with such strength and faith. She never gave up her faith, even when she thought she couldn't do it anymore and was tired of fighting, she held on with everything she had. I've had my moments where I felt like I couldn't handle anymore and get tired of dealing with this disease every single moment of my life. Theres not a moment that goes by that I do not think about my health and wonder what the Lord has in store for my future. In her journal she talks about her scars....."Each scar represents a new and different way that God has provided for us, protected us, and showered his grace upon us."

She talks about how often she is reminded of what she is going through......"However, all too often it just takes a simple glance in the mirror to act as a reminder of the suffering we are going through. We need to learn to see our scars, bruises, and bald heads as signs of God’s faithfulness" I completely understand how she felt at those moments.

Cancer is a battle. It's a battle I plan to fight with everything I have. I fight for my family, I fight for myself, I fight for my friends. I fight this thing they call Cancer because this is MY body. I didn't give it permission to move in and take over my life. I won't let it. This is my life and I will fight like I've never fought before!!!

I hope some of you can take time to read some of her blog entires and all the wonderful scriptures she wrote. I don't personally know her but I can tell you she has touched me through her words.

http://www.fisherags.com

Change of plans - for now...

So I got a call back from the lady that's over the clinical trials in Denver. The Plexxikon trial I was supposed to start has been pushed back another 4-5 weeks! WHAT!!!! I was expecting to start in the next week or so. Well that didn't sit well with me so I called my doctors in Houston. They have decided that I will now start another trial. I told her that I just didn't feel good about just waiting. It's been two months since my IL2 treatments and I can't just sit here and let the tumors get bigger. So I go back to Houston on Thursday (Oct 15th) to talk with my doctor and go over the details of the trial. As far as I understand it's a lot like the Plexxikon trial. It's a pill I will take. I will know more details next week after I talk with him. I'm still on the list in Denver to do the Plexxikon trial though. Bad thing is I have to have a wash out period between treatments. But I'd rather being doing something instead of just sitting here letting the tumors on my lungs grow. As soon as I know more I will let everyone know.