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, November 21, 2010

Nov. 20th Taste the Steak and be Blessed

                   I tell ya, I really get “wound up”  like a little kid. Now that sounds country…. Wound up. Waiting on Jonathan and Marlin to come visit and bring me a steak had my pulse racing all day.  I kept having to tell the nurse and tech that I was just excited and had to wait for them to get here. They asked if  I wanted anything (meds)…. Um NO! Well, yes, how about a beer and turn of f this dang intercom in my room?  I didn’t say that.  While, I was waiting, I decided to put on some make up and regular clothes, all the while praying that God would at least let me keep my eyelashes and eyebrows. Well, I figured that the first time my husband sees me in a week and the first time he sees me with a shaved head, I should have something to distract him. So I used those eyes on my husband today…. And he said that I was beautiful. He really is the sweetest man on earth, besides my Poppa Bill of course.
             Antsy as I was, I decided I better do something before I blew up. I was like the whirling dervishes my boss talks about. Except they have good reason.  I was asked by the director if I would be willing to play and sing for some people when I felt like it. I had heard that there were people here with no visitors and were really lonely so I figured I’d start with them. It is super hard to sing and play with a mask on, so I can only do 1-2 songs at a time. I was told about a man named Mr. L but that he did indeed have some visitors today but said he would “like to hear what I sound like.” Ha ha  It’s strange how we think we are doing something good for someone to “bless them” and make them feel better , and then it turns around you are blessed more! I know there is a verse about that somewhere…. Or maybe I dreamed that. That’s what is so awesome about giving, whether it is time, money, or something else. The giver is the one that gets blessed the most! God can always find someone else to do his work, but the point is you/me being obedient to him. 
            I met Mr. L, his pastor, and some other church members. They go to a church in Macon and Mr. L plays the keyboard. That’s why he wanted to see “what I sounded like” because he is a musician also. We basically had church in the room for a little while. They sang along to some praise and worship and then we had a group prayer where they prayed for me and our family. It was wonderful and I walked out thinking, “and I thought I was just going to cheer someone up.” Oh God, your so surprising. I never liked surprises much because I always figured them out but with God’s plan, I’m starting to be pleasantly surprised. I also learned that I need to practice songs… with the mask on…. GREAT.                                              PRAYER NEEDED: I was asked by my doctor to visit another patient today. A young mother that just got admitted and is having a very difficult time. Please pray that I speak the words that the Lord would have me speak and to help her see that we can make it through this with God's help. I don't see any other way to do it.
        Finally, my hubby and Marlin arrived, just in time for me to collapse on the bed from spinning in circles. I could taste the steak and I ate it very slowly. It was delicious.  “Who is this Marlin person”,  you may ask. Well, I hope that he doesn’t mind me telling you a little bit about him. I’m not a fan of pissing people off, on accident at least, so Marlin… I’ll change anything you want me to.  Marlin is a friend of Jonathan’s from college and he lives in Orlando. Yes, who actually lives in Orlando, well Marlin does . I love when Marlin comes to visit. He is the best house guest anyone could ever have. He brings food and cooks…. Steaks and Milano cookies for me J He cleans up after himself, makes the bed, is the perfect mix between friendly and funny but is able to entertain himself for hours if he needs to. He loves our dogs and they love him. Marlin loves the Lord with all his heart and brings beer with him. Marlin listens to people and you can tell that he isn’t just thinking of the next thing he is going to say. Marlin is going to be the catch of the decade (ha ha) when God brings the lucky women into his life.  Being the successful match maker I am, I know that a certain friend of mine that lives very close and him would be perfect for each other. They have only briefly met though.  Maybe that is an attempt to also get Marlin to move to GA. Heck, he could move in right next door. I like him that much! While, he was here I FINALLY got to see a Helicopter outside my window in the daylight! I was so excited. 20 days here and hearing them and I finally catch one coming my way! I wanted to be pilot at one point and would still love to take flying lessons one day.


       After Marlin headed to Chattanooga to see the 3rd musketeer, Daniel B and family, Jonathan and I took a walk around campus. I had not walked much in 3 days due to feeling bad and the docs are serious about walking.  There is a white board in the hall with names on it and marks that indicate laps around are 6E floor. 21 laps is a mile. My name is not on the board. See, when your hooked up to whatever is being pumped through your veins. You can’t leave the floor. I tried to walk the halls one day, but as soon as I found out I could go outside… I was OUT. Well, I guess I’m going to have to get over that because I found out that when I’m back for my 4-5 days each month, I’m hooked up the entire time. Geez Louise. I’m going to have to be a hall walker, with my glorious bags hanging and rolling beside me. Maybe I can put some decorations on it to make it interesting or a sign that says “check out my bags”.  I need some battery operated lights for this next trip back and I’ll find a Santa to hang upside down on it. Music…. I’ll stick my IPod on there too. Maybe I’ll start a hall gang and we will call ourselves something clever.  You think I’m kidding.
                   Back to my husbands visit. I’m not sure if you all really know how lucky I am. I’m falling more in love with him every day. He is my best friend and I miss him so much. We are just right for each other! One of my future blogs, I’m going to write the wonderful story of meeting and meeting again. It’s a beautiful love story. We went on a walk and it was beautiful outside. I took my hat off and the sun felt good on my head and Jonathan did care if everyone was looking at my blue shaved head. We took some great pics and I wish we would have brought a blanket because we laid under a tree for a few minutes and it’s was glorious. We went back to the Museum for a few minutes and saw the Egyptian exhibits. I loved the mummy collection and jewels they have on exhibit. Again we were able to get in for no charge, so cool. By the time, we got back to the room, I was on the bed again. I’m really going to have some mental issues with this tiredness thing. I’m going to have to learn to do large math problems in my head so that I’m doing something.  Jonathan did a great job at demonstrating he can change my dressing for my nurse and he made me a great worship mix on the Ipod. I was sad to see him go but it was his mom’s birthday and I guess  I should share him J Jonathan told me about a dear neighbor of ours that passed away. Mrs. Ruth. I have known her for a long time. I’m so happy that she is home with Jesus now because she really suffered there for a while. Now I know that she is smiling and dancing. She is a hoot!


                  I decided to “call off” the other visitors that I had scheduled today. I don’t know why I say call off, Jonathan and I don’t know why I say weird things. Sorry, to those the planned on coming. I love you! Please know that it had nothing to do with you! I have been getting really tired easily and felt that I should get some needed rest and WILL my bone marrow to produce the number of neutrophils needed for me to go home in the next couple of days. Also, the more people I see right now the more chance that I can get sick. I’m just too close to going to home to risk it. I’m having no visitors on Sunday. Now, don’t you worry.  Yea, I love people and love to talk but I’m also one of those who need time alone. This is going to be a long road and I’m going to need visitors in March as much or more than I do this weekend.  
                  I pretty much rested the rest of the evening except for a short visit with another patient. Her name is C at this point because I don’t know if people want me to use their names. She was diagnosed this summer and also has ALL. She is such a beautiful and wonderful person. She showed me how to tie the scarfs, but I don’t have the right kind yet. She told me what to expect with coming back and forth and gave me some other helpful hits. It was neat to see how alike we are about somethings.  She has her own blanket, pillow case, toilet paper, etc to make it nicer. One thing that she does that will help me a lot is bringing a small lamp. Like me, she is very sensitive to fluorescent lights.  Hm… a pop up lamp.  It was great talking to her!
               I’m preparing myself to go home. Prepare you say? I can’t pretend that home is not going to have it’s frustrations. More about what I can’t do anymore or don’t have the energy to do.
                                                        Asking for help.








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