I have more interesting things to write about than my medical updates but don't want to until I get the pics uploaded. We had a great time in Helen until Sat night about 3 am. I woke up in the worst bone pain since radiation and was crawling on my hands and knees to get around. My GVHD rash was also very angry and I was coughing my head off. So we went to Emory on a Sun.... blah.... they gave me something for pain and IV steroids. Today, I went back to Emory and felt so weak that I couldn't drive myself, so my sister Anna took me. Dr. Khoury just feels that I have a cold, Jonathan has it too, kept my steroids the same, and started me back on cyclosporine (anti rejection meds). I ask him questions, and he will honestly say ," I don't know with your case." Couldn't I have at least won the lotto with this kind of luck. He just says that we are going to try to keep from relapse again and let the study drug do his job. Cyclosporine is a weird medication.... it gives me dog gas, no kidding. So if you are around me and something stinks, yes it's me. Most of my body looks sun burnt from the rash including my face. My eyes are either watering or dry as hell. They only good thing about the Cyclosporine is that it makes my eyelashes look amazing. I'm still trying to exercise and eat well, but still super depressed about the gardening. The up and down of the steroids I think is slowly making me crazy. What I really need is some sleep.
Amazing Eyelashes to come,
Heather
WELCOME
Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!
Please read, comment, enjoy, learn, grow, LOVE LIFE.
Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.
Tuesday, January 31, 2012
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