Dr. K was late today.... very unusual. He said that I'm doing wonderful and will see me again on July 1st. That will also be the day that I get my PICC line out!!!! That means I can go swimming, take a normal shower, and not have to remember to flush my lines everyday. By that point, I hope to be off 2 more medications. No drops today but I did have a reduction. I have been having a lot of headaches, cramps, and been very tired sometimes. I was able to invite Dr. K to be part of the running team along with some other employees that I have relationships with.
It's still very hard not to be able to take care of Evalyn, sometimes and I worry that if Jonathan gets a job soon I won't be able to handle it. Quite a few of my sitters are not able to sit anymore and we can't afford to hire someone. I guess that is why we are a peace right now that he has not found a job and can concentration on studying for the CPA exam and taking care of us. It's clear that I'm not ready to be a full-time mom or employee. I have good days with work and then I have days where I have such bad cramps or headaches I can't do anything but go lay down. Then I have really good times when I'm able to work, play, do an art project, etc. It's kinda up and down.
I had to cancel practicing singing with someone today because I over did it yesterday and had to go home a rest. Plus I didn't sleep last night because I kept snoring and waking Jonathan up. I don't want to be one of those couples that don't sleep together when we get older so I'm hoping it's the medication because it makes my mouth dry.
All in all I'm super lucky to be doing this well around 80 days. The Lord is good and I'm thankful!!!
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.