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.

Thursday, November 25, 2010

Nov 22-23 First days home

house service and a side of meds    yum
           We had a great night playing with the pups, kissing on Evalyn, and watching one of our favorite shows, Lie to Me. At some point that night, Jonathan finished shaving my head. Ouch. My head is a little sensitive now. I wonder if bleaching my hair made any different. Oh well, the blue was worth it.  It was odd going through all the meds, sitting up my little station, and then flushing my own lines. At least I was with my Jonathan and we could laugh about it. And I had a beer and said “IT is good”.
           The first night back was a little weird, sleep wise. But really, I don’t sleep well anyway, so I was probably over thinking it. For the first time in 3 weeks it was completely dark, in my bed, no nurses talking in the hall way, no beeps from mine, or someone else room, no helicopters, no vampires, no waxing of the floor. It was calm and quiet. I think I slept about 3 hours that night, but it didn’t really matter due to the excitement of home. I think I got up and read or wrote. Now, sleeping snuggled up to my…. You guessed it…. Cutest little boy in the world Wallace was a relief. He is my soul dog. Snuggle with Jonathan, well, he doesn’t like to snuggle for too long and he has a cough, we haven’t even kissed yet. This is a funny story about my sweet husband. We were laying on the cough together, kind of snuggling I guess, and I noticed that he was a little frigidly. I got a little closer, closer, “I feel like I’m in a sewer!” he says. Well. We laughed and still laugh about that.  We both have our little things…. Mine is ringing phones… overload.



               The next morning I was laying in bed, Evalyn had already eaten and went back down, and I knew I needed to get up, eat, and take all that medication. “What am I going to eat? I’m used to room service; man that bacon was the only thing that hospital could make. Hmm… I don’t know. I have to eat”, I’m rambling to Jonathan. Then, I hear my poppa Bill trying to sneak into the front door, which he will do if he is dropping something off and doesn’t want to bother us. Like he could.  I came into the kitchen and my sweet poppa had biscuits, country ham, and a mug of coffee. Wow. Since, I’m especially fond of the salty meats, I gave him the biggest hug and kiss I could.  Just kidding, I missed my poppa very much and it was so wonderful to see him. He told me that he liked my hair.
                 I have been saving the little dishes, that came with the house as many things did, and I’m guessing that they are boiled egg holders. They little painted fruit on them and they are very dainty.  Ruby and Joe Lands, that used to have this as a weekend home, had a son that was a chef and would bring them little things from around the world. Now, when I ever say “come with the house”, you’ll know I bought this house fully furnished, linens, outbuilding stuff, dishes, full drawers…. Very strange to go through someone else’s house, be we did find some neat things to keep. And donated at least 90%. Back to the dishes…. I have never used these and decided that I’m going to use them as my pill holder in the morning. Out of the dispenser, into a pretty mini bowl, and sits there until I choose to take them.  I never knew why my Granny would take her time with her meds… now I know.
               We had the most wonderful day! We went on a golf cart ride with Evalyn and Wallace, unpacked and got organized and spent lunch at my grandparents. Jonathan had to go out to the store and we had to get quite a few things, only to realize that the gift card someone special had given us had $200 dollars on it! I do hope that God blesses them 10 fold… isn’t there a verse about that somewhere, anyone? Gosh, I’m not a big eater but that first day back, I ate and ate. At my grandparents we had cornbread, spinach, pickled beets, butter beans, chicken wings, mash potatoes… yea… this was lunch.  My grandparents has always wanted the chance to try and fatten me up a little, well, I had just lost 12 pounds, so let’s go for it J  Lunch was so tasty and felt like home. Evalyn played in her activity center a friend let us borrow. The most special thing that happened was that my Granny told me that I was pretty even with a bald head and that it looks good on me.  Sitting at the table with the sweetest couple you have ever seen eating some home cooking, it was an early Thanksgiving and I would not have wanted to be anywhere else on earth. Their 65th anniversary is coming up this weekend….. 65….. a lot of people do not live that long. One day, I will tell you about how they met and married. Classic 40’s love story, so beautiful.
                      It is amazing how fast a baby changes. I knew it was happening before but after 3 weeks, Evalyn is listening, seeing, and paying attention more. Her legs are so strong and she wants to stand up all the time. I felt before that she may not crawl and then found out that Jonathan never crawled. He went from cruising to trying to chase his brother, Robbie. Except in this case, it will be Wallace and Chloe. I thought I loved these dogs, but they are Evalyn’s favorite thing to laugh at and look at. They walk in the room and she looks for them before she can even see him. Chloe and Wallace are so good around her and will come and check on their sister. Evalyn has become a daddy’s girl these 3 weeks; she loves her daddy and thinks he is so funny. For a little bit, I think she kept wondering why my head looked different every time she saw me…. Hair, blue hair, no hair, hat, wig, different had, and what is that a turban or a do rag??  She got used to me pretty quick a starting smiling more instead of studying. Ahhhh, she remembers me J I’m her mommy. We have been singing, dancing, and reading. I had to start changing her while I was sitting on the bed due to my leg cramps, but that has been the only issue around taking care of my sweetie.
                           Sometime on Tuesday, when Jonathan was at the store and Evalyn was sleeping, I almost became OCD and started whirling about. See, when you are in a hospital room for 3 weeks, you know where everything is, everything has a place, everything is perfect, but not perfect. Weirdness.  My house is pretty organized, but I always have projects going and move things that will now be better here or there. I have Evalyn’s clothes and my clothes just so and we do a good job keeping the house picked up. Well, Jonathan is the neatest man you will ever meet in your life, so the house was neither dirty or a wreck. The floor was even vacuumed. There were just enough unorganized, unfinished projects, things that could use cleaning, that I could not possibility do all of it right then, that I felt a little scattered brain and did that “ what did I walk in here for… ohhh look at that… I should file those papers away…. There’s BOB ( you’ll meet him later) he’s banish to the back room, I should call Frank and see if he can stay there….oh yea, back room, I was moving the things that we are keeping packed for the next hospital back there…. Oh my record player, I missed you… “.   It kind of went on for that a little bit until I finally managed to do the 2 things I started out to do in the first place.  Looking back, I think I was just glad to be at home doing something and kind of being left alone to do it. I love my family, but I love my alone time too. I like to think I am the perfect mix of my Mom and Granny on that.

               

1 comment:

  1. I kept thinking that Emilie might not crawl because she's been trying to stand like Evalyn is for ages...I don't know if Jon crawled or not. The whole sitting-crawling-cruising thing happened really, really fast though. I feel pretty sure that she'll be walking long before she's a year old, which is just crazy. Time flies!

    Evalyn is such a doll. =)

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