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.

Wednesday, March 23, 2011

Leaving Home and No Job for You

            As you can imagine, Monday and Tuesday were terribly difficult know I had to leave on Wed and there was a chance I wasn't coming back. I'm not usually a weepy one and can usually hold it together for the most part. Well, not those days. Doing anything with Evalyn just made me start missing her already. I wonder what she thought when she saw her mommy crying. She was probably like, " That's not how you do it mommy, here it goes...." It seems like she knew something this week. At times, she would hold my face in her hands, turn my face to her, and look so intently deeply at me with her big blue eyes like she was saying, " I know something is going on Mommy, not sure what it is, but I love you, now come here and give me a kiss." Then she would give me the sweetest kiss, not the silly open mouth baby kiss, but a real gentle kiss right on the lips, being careful not to scratch me or pull my hair. Ha, if you missed that one, you better stop now.
              I cried in front of most people in came in contact with and didn't answer my phone because I don't like talking on the phone much and well, talking on the phone while crying seems worse. Crying in front of my grandparents was terrible because I know they will worry about me more than anyone. Not because they care about me more than anyone, but they are not as rushed and busy as most people. I don't want them be too worried because then they will try to come visit me, I know you are reading this Poppa, and they don't need to come to the hospital. Too germy.
            We did manage to go to small group on Monday night for Jill's birthday dinner, which was yummy, she turned 30, again. Evalyn was so good and happy for everyone. It was nice, but we had to get out of there before I cried in front of all them, not that they would have minded, but geez, it was a birthday party.
           Tuesday had enough trouble of it's own. I was so exhausted from crying and not sleeping due to my allergies or whatever it was/is... that leaving wasn't that hard. Luckily Evalyn was asleep so I didn't have to leave her while she was awake. I started to choke up when I kissed the dogs goodbye but held it together. Beleive it or not, this will be just as hard on Wallace as anyone. He is enamored with me and got sick last time I was away for a long time. Chloe was just like, " See ya Mom, I'll make sure everyone does what they are suppose to and report it back to you. I will do most of my inspections in the kitchen and give out as many licks as I can."
                 Emory is a wonderful hospital and I'm so lucky to be treated there, but dang, communication is something horrible. When your already on edge about your health the last thing you need is for the people that are making crucial decisions, to not know something, or give the wrong information. Yesterday, I couldn't eat because I was getting my PICC line changed to a larger one and they kinda sedated me for that. So I was hungry, which is no way for me to face the day, as most of you know. There was some confusion about what lab I was suppose to be in and how much blood they were going to take. I ended up giving a lot more blood than expected on an empty stomach. We then met expectingly with Dr. Khoury due to me having the stuffy nose and such. He gave me a steroid pill that would clear up any allergies and if it did not, then it was something else and we would need to postpone the BMT by two weeks, if the donor would still do it. Good Greif. Then we headed to radiology, late of course due to the confusion and Dr. visit, where they didn't seem to know what was coming in or coming out of me. Once they figured that out, we got started, and now I have some new holes in my chest. I didn't get to see the guy that promised me a BLT when I got out of the procedure in Nov. He didn't do what he said. I let him know that day that he missed getting set up with my beautiful sister. Ha! In recovery, Jonathan broke the news to me that he didn't get the "This sounds like perfect job for our family, they basically acted like he had it" job. I tell ya, that was it, I was pissed. I'm still pissed, can't we just have a little mercy here???? I'm ill that they went out there way to tell him that an older student with life experience was so nice to talk to, that he scored the highest on their little test, and said they would get back to him a week ago. Which of course they did not.  I think I was more upset than Jonathan, at least outwardly. It stressed me out so much, I think that's why my new wounds started seeping.
                Jonathan and I went to the hotel, which was very nice. The pool area was beautiful! I loved the tropical plants and retractable roof.  We met a very nice bartender that had a wife who survived breast cancer while I was having a dirty martini. Yep, missing meds and alcohol. Sometimes.... you just have to break rules, except you future Evalyn who may read this one day. We were both in a terrible mood, not at each other, but at the world. You know you have the love of your life, when you are still glad to be together despite all the terrible things going on. We went out to eat at Mary Mac's tea room, like normal people on a normal night, except we had a looming cloud over us that: A. I'm about to be away for a long time, and not on my dream trip or B. I will have to go back home for two weeks and dread doing A. I might as well have carried a flag that said "I'm sick" because my bandage from the procedure was enormous. We went back to the hotel, watched some trash on the big tele and went to bed.
              It is only strength from God that is keeping me from losing my mind. I'm not kidding.
          

2 comments:

  1. "It is only strength from God that is keeping me from losing my mind." --- Me too, baby

    And yes, sweetie, you are the love of my wife.

    (and the scratching / hair pulling comment: priceless!)

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  2. We are all thinking of you and love you always...

    I think Evalyn needs to give Emilie some kissing lessons, because most of the time I still get the sloppy open-mouthed ones. I caught that hair comment, by the way!

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