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.

Saturday, March 26, 2011

Day -4 and -3: Done with the Oven, Now for the icing

You can't see how swollen my neck was due to the huge ice pack!

I had to lay in this position forever! 

The huge radiation machine that zapped me. 
               Thank goodness I was able to get some sleep on Thursday night! I was so out, I didn't even wake up when they came to draw labs at 12 am. I never sleep that well. Usually I will wake up if someone touches, or even thinks about touching, the door knob. On Friday, I finished the last two rounds of radiation. I'm telling you, laying in the same position for that long is enough to drive you crazy. Silly me thought they would have an IPOD hook up but they did not, so I made a bunch of mixed CD's to take. I ended up leaving them there for those that come behind me. That last round was pretty emotional for me. It really stinks to have to do this much harm to my body in order to get better. I was trying not to cry because they don't want anything on your skin since it can make the side effects worse. I have to admit, I shed a few tears when they were almost finished, knowing there was a 99.9% chance that my ovaries were not going to be functional anymore. Not that Evalyn's not enough for us, but I never imagined I'd have just one child. Yea, I know, I know, God has a plan, there's always adoption, I'm young and you never know, yada yada. That doesn't help me feel better at this point. Not to mention all the other risks that come along with that much radiation. I swear they are trying to turn me into a paranoid schizophrenic.
               My glands in my neck are not swollen anymore and my bone and muscle pain I was having is gone. Very glad about that! My EKG came back fine, but they are still concerned about my high pulse rate. I feel that it has always ran a little high. They are going to keep an ear on it. Hee Hee. I still have a sinus infection, not a good thing to have when your immune system is being shut down. I'm pretty much on every anti medication possible right now and my tummy is not happy about it. Another side effect of the radiation, is that my salivary glands are not functioning correctly. When I take a bit of something, it's like I put 5 crackers in my mouth, except it tastes worse than crackers. So... eating is not going so well. They said that I need to try things that goes down easy, wet and mushy basically. Wow, that makes me hungry. I'm also on a diet restriction. I don't understand all of it yet but I know can't have any raw veggies or fruit. I was out of it when I read it the first time.  My BMT doctor is Dr. Flowers. I like him a lot, he looks like Tiger Woods, but that's not why I like him. He let me know that next week is going to be pretty bad and that there may be a short time where I'm not eating anything. Well, I guess it's a good thing  I never lost that last 10 lbs of baby weight! It is very hard for me to concentrate and to do much. Even writing this blog is taking forever. As I start to feel worse they may get shorter or Jonathan may have to take over for a few days.
                On Friday night, my sister and brother came to visit. We took a nice walk on campus and got some food at the food court. We were entertained by a group of what looked like high schoolers, sparring with foam weapons and shields. Jennifer and I agreed that if your going to do something like that, you should just go all the way and dress the part. It was such a beautiful day and I saw some gorgeous tulips. I took some pictures of them but I wasn't in the mood to stand next to two very very good looking people with my mask on for a picture.
Jennifer and Daniel, I love them so much!

I don't think my tulips at home are this pretty!

               I have been feeling pretty depressed the last little while,  knowing how long I'm going to be here and that it is going to get much much worse before it gets better. I even turned on the T.V. last night. I watched some good GA shows on PBS. I did get to move to a better room so that was nice, but then Jennifer helped me unpack everything so then seemed more official that I am staying for a long time. I miss Evalyn so much. It's hard for me to talk, write, or even think about her without crying. I know that she is being well taken care of, by my my mom at this moment. She is great with her and Evalyn loves her Grandma Kim. I just have to try to keep my mind of things and remember that if this had to happen, this is the best time. It would be awful if she could call me and she was crying also. It's true when people say that it is easy to praise God during the good times and then not to during the difficult times. I had to make myself listen to some praise and worship music this morning and had to make myself pray. I know that this is a time that I can really seek the Lord and he can bring our relationship to a new level. I just have to do it even when I don't feel like it.
            I had a lot of medication I had to take today. It was insane. It's all making me feel out of it, sleepy, but ready to go at the same time. I'm going to probably sleep on and off the rest of the day. Tomorrow, I get to see my hubby, Evalyn, and my Mom!

On Thursday, when Evalyn and mom came to visit. 

I got a kiss!

1 comment:

  1. Glad you are done with radiation and I hope you are managing to survive. I love the pictures you posted. I love you!!!!

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