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.

Wednesday, May 11, 2011

Emory update May 11, 2011

This is my Lila wig, FYI my face is swollen from the meds, no I'm not gaining weight.




Hello Everyone!,  
             Yes, it is 4:30 am and yes I just couldn't sleep anymore and no, I didn't want to take anymore medication. I'm just going to start my day early. The Emory appointment went well yesterday. I always consider that it goes pretty well if they don't admit my butt. Dr. Khoury took me down one less pill of steroids a day and off the cough medication, YEAAAAA! The only down side of coming off this amount of steroids is bone pain and the crashing some from not getting a daily jolt. That is why he is doing it slowly. The bone pain is manifesting itself in my knees, which he said is common in young adults coming off steroids and the pain was going to get worse before it gets better.  Basically, sometimes my knees just lock up in very bad pain and I can't get up or down.  That was good news because I was thinking that my knees were all messed up from the radiation and I was going to have to start taking some expensive supplement to build it back up. Dr. Khoury smiled and told me that now I was playing doctor. I told him there are a lot of doctors and nurses in my family and hopefully he would get to meet my grandfather soon. 
                My CMV levels were not back yet and we will find out about those early Friday morning. I usually get to Emory about 7 am on Fridays. I'm usually up anyway. On Friday we will find out if the new medication is controlling the virus. If it is it, I will stay on it for a while. If not I will change to an IV drip twice a day, which I should be able to do at home. The rests of the ifs are too ugly to mention at this point so let’s just think positive. I did get permission to go to a church service if I wore my mask and didn't set around a lot of people and I think we are going to try to go to a Rome braves game next week. I still get tired pretty easy, out of breath, and have terrible swelling in my feet. I also have good news. I have been wanting to get dressed more and seem to care more about what I look like. I think that that has a lot to do with it being warmer, you know how I like my dresses. Most people at this stage, I’m guessing are wanting their hair to come back asap. I’m telling ya, I’m in no hurry. I think I like being bald because I love hats, wigs, and scarfs so much. I never likes washing or fixing my hair. So in your prayers you don’t have to worry about hair J
                  I followed up with the Gyno today about the early menopause situation. Right now they say that my levels are off and I have a thin uterus and the levels will continue to go up. The good news is that I found out that I could one day still carry a baby using Jonathan's sperm and a donated egg, where we would actually know a lot about the donor. I don't know if that is that is the path God will have us go on but it was comforting to find out some good news! 
I'll update you on Friday!

1 comment:

  1. Sounds like you are doing pretty well all things considered...some ups...some downs...but you're always looking for the silver lining.

    I was curious if you would be able to do IVF with a donor egg and carry the baby. It's great news to have that option open!

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