I wanted to give you all an update from yesterday. By the way, those of you that are just interested in parts of the blog, for instance, you just have to see pics of Evalyn, don't forget on the right hand side there is an index.... just a a reminder.
MEDICAL UPDATE: I'm going to bullet again :)
1. liver is normal, but they are still keeping off one pill for now
2. I have to increase my BP medication, one more pill
3. I have to start a new antibiotic so I dont get pneumonia, but just on Sat and Sun, weird
4. Cough is there, but better, inhairler changed to PRN!
5. Still on the same about of seroids, yuck
6. Been taking the sleeping pills I was order to take, sleeping better, follow the rules heather
7. An icky part is that he has insisted that I use the rash cream 3 times a day before he will take me down on the steroids. I hate this cream. How can it not get on Evalyn... I don't know... I'm still trying to figure it out
8. Started the new study drug.... didn't get sick..... but it could be the sugar pill. It's a secret.
9. I had mentioned abormal bleeding before and that I do not beleive in taking hormones because when I do I have to be on a anti depresents, and yada yada. Well, at the beginning of the week, they doubled it because it got so bad. Well, it's making me weeping. Not depressed, I'll just start crying. I could cry at a dog food commercial or just thinking of how much I love someone. He asked me to make an appt with the women doc an maybe there is something else going on. Please pray for me on that. I don't want to be infertile due to the radiation and I don't want to deal with all this other stuff either. Sorry to be so blunt, but you can tune out at any time.
10. Knees are hurting, I need to take it a little easier, hard for me to do, but I'm trying today.
11. I had one scare yesterday. I went to do my EKG for the study drug, last thing on the list. My heart rate was crazy and the doc came in and said that usually if someone's is that high, they can't leave the hospital. Crap, I don't have my pillow, I thought. The issue is always communication. They are just sent down with orders to do one and don't know anything about the person. So I explained everything I'm on and why this is up and this is down but he still had to talk to Dr. K. I have spent hours waiting for the main man, as wonderful as he it. Soon, I was out the door. Close call. What happens to people that don't know what is going on....it seems sad to me. I hope they have family members to help.
12. Best part for last, at this time I only have 1 Emory appt next week, god willing. I do have to schedule some appointments here in athens . Less gas for us, well my mom :)
UPDATE on Janet: I went to ICU to see Janet yesterday and followed my grandfathers rule that sometimes it's better to ask forgiveness than premission, ha ha. Don't worry, I was suited up. She was not concious, and this is acually the frist time I had seen her. We were usually not on the floor at the same times. I was able to pray for her. She was moving all around seeming uncomfortable but when I touched her forehead it's like the Lord calmed her. I said the prayer and got the heck out :)
I was also able to walk across the street to Children's healthcare to visit one of my favorite nurses that just transferred. She is a doll, I just love her. And her name is DORI. How cool!
My mom left to go back to Cville and my aunt Sherrie wasn't going to pick me up till 3pm. So I had some time to myself. I felt like such a big girl, ha ha. I have a rolly lap top bag now that makes it so easy to carry my snacks and toys. I met a man named John in the infusion center who was very nice and one lady just starting speaking blessings over me and it was so powerful, I forgot to get her name. The staff I see all the time are great, I love them, they call me VIP now. Hee Hee. I'm going to right up some good stuff about them and pass it on to the big wig. Wigs, ha ha ha.
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.
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