Mar 9, 2010

BIG Update!

Ok finally got a few minutes to talk to everyone. I've been so busy the last couple days that when I got free time I just slept because I'm in so much pain as well. I wanted to let all of you know what has been happening the past few days.
First, I want to remind everyone that I started this blog for all of you. I have repeatedly told people that I post so I don't have to repeat myself 50 times. I already have 2 parents, my chain of command, and doctors that I have to do that with. In the condition I'm in I don't have the energy or breath to talk to everyone, I haven't been feeling well enough to talk and sometimes I like to just be left alone. I'm not saying this to offend anyone by no means because it truly keeps my spirit up to know I have so many people that care but I'm so worried about my treatment right now that I don't have time to talk to the 9 people that have been trying to get ahold of me. Sorry guys!
Alright, as most of you know I went to UCLA yesterday to find out results. I prepared myself for the worse because I could feel the changes in my body and the tumor on my leg was growing. The bad news came. I'm already not responding to the trial at UCLA. My tumors have grown. The doc also said to me "Amanda, you remember when I told you that people will respond but it's only for a period of time?" I said "yah" he went on to say "Well I never thought your time would be so short. You had the shortest response time than anyone else on the trial and you have THE MOST aggressive case of Melanoma I've ever seen". Thanks doc. Let me just remind you that this is a doc that specializes in Melanoma and has been doing it for years. Why am I the lucky one? I've never had the best luck with stuff and have always had to work my butt off for anything and I wasn't expecting this to be any different but it just sucks. We sat and talked and he threw another trial out at me but it just opened this much and they don't know enough about it. I told him I needed time to think and wanted to talk to some other people. I also had to go into dermatology while I was there so they could get a biopsy of the new tissue in the massive tumor on my leg. As I was sitting down with the derm he goes on to tell me that my doctor is actually uncertain what to do about my case. The problem with my case is that with it being so aggressive a week could make a difference so whatever decision we make is probably the only chance we get.
I had one of the girls from work driving me home and I pretty much just sat there in silence the whole way home trying to think about everything and gather my thoughts. It was a huge bummer to find out news like this. I kept thinking "maybe the statistics are right, people diagnosed with stage 4 melanoma are dead within a year, and geez will I even make it to see 25, how did it happen so quick? I just competed in the CF Games less than a year ago and now I'm dying." I've learned that you just get put through trials during life and you got to accept it. By the end of the night I was in excruciating pain. Talk about pain that is crippling people, you take one step and you want to collapse on the floor. Thank God Tony is around. He's been an angel since I started getting worse again. I wanted to go to the ER so bad last night but knew that I am risking my treatments if I did so I sucked it up for something better. I also managed to call my doc down in San Diego as well yesterday so we can discuss my next option. It just so happens I had to come down to SD today for my medical stuff I'm going through to get processed out of the military so we set things up so we could meet.
Tony was able to drive me down because I'm in no condition to drive with all the pain. The doc and I sat down for about an hour and discussed about 3 options and decided on the best one that I needed right now (because my liver is very close to failing again my body can't handle the other 2) Doc went on to say "we can outpatient you and it'll take about a week", I told him "doc how about we inpatient me because I don't think I have time to wait. I already called my chain of command and told them I might be staying down here because of what's going on. They are 100% supportive (they've been amazing too). He did an exam on me, felt my liver and said "wow" "ok""I want to start you right away". So now I got admitted to the hospital so I can be on standby for more scans (they need updated in their system), I'm getting a port installed in my neck, and by tomorrow or Thursday I should be starting my first round of chemo treatment. Yep chemo. Great. We decided on 2 different types of chemo and they have about 70% response rate. It's once a week for awhile. The doc said he hopes this can reverse what's going on a bit so we have time to get me on better treatment. I just want to remind everyone that response rate is not a cure rate people. That's means you can relapse. That's what just happened to me on the trial. Well I think I told you as much as I can for now. I don't want to write a novel and I'm going to try and give you guys daily updates since I'm restricted to a hospital:) plus I go for my Ct scan in about 30 minutes (9:00pm) so want to just relax for a few minutes. We all have to just keep praying. The lord does answer prayers:) Amen

9 comments:

  1. Just read your post --my thoughts are with you right now and I will pray for you tonight. Mindith

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  2. Oh, Amanda - thank you for updating us. It can't be easy....my heart and thoughts are with you, and you know we are all here for you for whatever you need! xoxo

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  3. Amanda, I am here for you and praying for you! You are an amazing person and you have inspired me in so many ways! You have touched my heart very deeply! Thinking of you! Xo

    Jeannine

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  4. I love you so much. xoxoxoxo
    love britt

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  5. Matt are I are praying for you. You're in our thoughts. We love you!

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  6. I am Brittney's mom. I just want you to know that I am praying and thinking about you. You are very much loved. You have an amazing spirit. God Bless you Amanda!!!

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  7. Amanda. You are in my prayers daily. You are a special person and god will get you through this. Love Sue. oxoxo

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  8. Thank you everyone! It means so much to me. I'm fighting my butt off here:) xoxo

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