Figure I could bring you up to speed my last few minutes of solitude here at the monastery. Now they are saying that all my problems comes down to GVHD.... the eyes, we knew, the skin, the stomach was the meds but is now also GVHD, and the swelling in my feet, he says that is GVHD too. My stomach has gotten somewhat better the last few days not sure if it is the medication ( the new oral chemo, not the study drug) or if just being around so much prayer the last few days, or both. Either way, I have not had diarrhea, nor had to wear a diaper. I have had to run like hell to the bathroom to pee about 6 times per night. My feet were so swollen on Friday that I could barely walk. You know the wrinkles on the back of you ankle..... well mine had none, the skin looked like it was going to bust. I've had some stomach pain that has kept me from doing some the art I wanted to do here, but I actually was able to concentrate enough to read...... out of a book. I have not had the concentration to do that. Of course I have to now buy or check these books, so I can finish reading them. Hey maybe I can finish reading Middle March which is what I was reading when I relapsed back in Oct. They finally found some emergency medication that they hope will work when my bone pain attacks so bad I'm crying and shaking. I don't understand why some people do not get that I don't want to be on a "time release" pain medication everyday when the really bad pain only happens every so often. Some people are in that much pain everyday, and I do have pain every day, but I don't think the costs out way the benefits at this point. Plus, I can't sleep on pain pills, they do the opposite to me. Had some other medication changes and I'm starting to look like a drug addict if you looked in my case.
This week I hope to start back to my yoga class, maybe a zumba, hope to find baby sitters, somehow get out of going to Emory for one week, go to the children museum with my cousin, sell some items, get the website or something going for online orders, and get more people to sign up for Be the Match run. You know I have had only 2 people sign up so far... my dear cuz Shanna and her daughter. Come on folks, I know it's not till Oct but it encourages others!
I had someone volunteer for yard work out of the blue and someone is setting up a "food train" with a meal at least once a week. How wonderful as it will take a while to recover. Dr. K said that the medication takes 4-6 weeks. I'm have very sharp stabing pains, which he is says is gas or the ulsers. Either way, they hurt bad.
Today the Catholic Church celebrates the birthday of John the Baptist. I think of how much he suffered in order to fulfill his destiny to proceed the Lord. I hope and pray that all this pain continues to bring me closer to him, to give him glory in bad and good times, to reach out to others that need me , to provoke change where needed, and more my own sanctification. I must be one stubborn SOB.
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.
Sunday, June 24, 2012
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I am praying for you Heather.. You are always in my prayers. Hang in there and stay strong! :) God bless!
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