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.

Tuesday, November 9, 2010

Nov. 9th Chemo and Home sick


Hey Everyone... It's in the middle of the night, when normal people are sleeping. I'm really a weird chick, if you haven't figured that out. Anything I thought I was going to "do" on Sunday or Monday, well that didn't happen.... let me catch you up.
**Sunday.... I still had the liquid chemo and steroids running through my body. I had a great visit with my sister, Jen, my hubby, and uncle Mike and Aunt Judy. Everything they did for me that day has made me understand Gods mercy even more. From the thoughtful food to decent toilet paper, I'm am really set up here in my home away from home. I can't wait to hear more about my uncle Mike's time here at Emory and about my aunt and uncle falling in love. I will record their story... it's beautiful. My uncle looked out the window and pointed out where he broke up with a girl and talked about what the campus looked like. After talking to my Aunt, I really realized how much I do not remember about last week. There are whole pieces of time that have slide off into eternity, I will never get that time  back. You know I hate to waste time. That is very weird for me, because I have such a great memory. It's also strange the things I remember so clearly despite being sedated and so sick. I had a "Holy shit, I almost died" moment and it really scared me. It's does scare me.   By the time the visits ended though, my body really started to crash. As I said before, at least, I think  I said it, I am very sensitive to light, noise, too much stimulation, etc. Well increase that by about 500 and that is what I felt like between 6pm Sun and 3pm on Mon. I couldn't even look at the screen on my cell phone, open the lap top, turn on the lights, do anything except pray that God would help me. There are big beautiful windows in this room, they almost killed me. I did have a moment, at my little sink, where I actually thanked God for this..... and what he is doing through it.... who the heck am I? God's changes in me are really neat to see play out. And best of all.... I know that God still likes me. I know he loves me. But he likes me. Guess what, he likes you too. I was real sick at my head and stomach all night and into the next day. My body was crashing from being shocked so much. And boy did I crash.
**Monday- I felt bad that my brother Daniel drove so far here yesterday for me just to tell him that I couldn't do anything. He was a sweetheart though and and told me that he will come visit me again. He played some songs on the guitar for me, and it was beautiful. He really is coming into his voice and it makes me so proud to listen to him play and sing. I meant to tell him to learn let it be for me. I know it, or I did, but I don't have the energy to play the guitar yet. We were suppose to go on walk, I couldn't do it. On Monday afternoon, I started to feel more human. I am now disconnected from the liquid and everything for a while, till Friday, and let me tell you it feels great not to have to drag a, whatever it is, around to the bathroom with me. My uncle Mike joked about walking down the hallway comparing bags of liquid. Ladies, you only think you had to go to the bathroom a lot when you were pregnant. I had constant liquids and it took so much energy to get to the bathroom. I'm proud to say that I made it each time but humbled enough to know that at some point, I'm not going to make it. Hopefully, I'll laugh about it. I was able to change my shirt, Thanks to God!! I can get out of the room now, but I have not yet. It's on the to do list for Tuesday. I'm kinda comfortable in here. I'm nervous about leaving the room. For starters, I don't know where I am. I don't know those people out there. I have made friends with the staff, but,  I know that there are people I will meet "out there" going through what I'm going through or worse. It scares me to have to feel their pain along with mine. I've always been sensitive to others pain... I think we called it Burden Bearing or something. God give me the heart to handle their stories, or don't, just break my heart some more... it's really up to you anyway. 
           I had a great visit with my mom Sunday evening after I started to feel better. Bless her heart, she was so tired. My mom is an amazing women and I'm seeing it even more through this situation. I'm so lucky to have her. We don't live close enough, she says, but some people never see their mom. So I'm lucky. My Aunt Sharon, who works here at Emory, came by for a few minutes this evening. She picked up my dirty clothes. She is speaking at a conference this weekend in Orlando. I love my aunt. She has always treated me just like part of the family. See she is really my step aunt, nope, she is really my aunt. Her family has been such a blessing to us. I love you Etris family!!!!! I started reading a new book by Donald Miller, Through painted deserts, man, it's going to be good. Thanks Robbie Cape for letting me borrow it. I got some sleep tonight, even though I'm up now. I feel a lot better.  I also called my boss this morning, Sherrie King, they were having the monthly meeting today. It was good to talk to her. I guess I called to tell her to let everyone know not to count me out just yet. I'm still here. I started crying when I started talking about my peeps though. Sherrie said that she has seen some of my people and they know how much I love and miss them. Do they? The people I work for have touched my life for than any document or form I could have filled out to "help" them. 

**Personal Thoughts**
   I WANNA GO HOME! I was just dreaming about home. I have to most wonderful little house, with the most loving husband, cutest puppies, my BED, the lake. My neighbors. My baby girl. I'm more thankful now that is for sure.  I called one of my best friends, Eva and Jim Banks, today. They don't have a computer. Jim said that the fish probably aren't going to bite until I get back. I kinda hope he is right. 
      I'm thankful for all of the loving words everyone has given on this site. 
    Letting go has been interesting. I had to let go of coordinating Evalyn's schedule, thinking about what I wanted to plant in the yard this fall, all the stuff I just left out.... before I took the ride here to Emory. I had to let go of anything I thought I could fix about this place in a short time. That's was the steroids talking. It's been freeing but also very difficult. My world has gotten so small and so big at the same time. It is amazing how much Evalyn has grown since I have seen her last. Her laugh is so cute... it's reminds me of my sister Jennifer's laugh as a child. She is really being taken care of, I'm very lucky. Please pray for Jonathan. He is an amazing Dad that is having to really be spread thin for a while. I hope to get home to you soon my darling. 

** Medical** All my docs came by to see me today. They all say that I'm doing great and that the treatment is going very well. My docs are really funny and caring. I can see how much they care in their eyes. My Fellow, can't spell her name, came an explained a treatment that I will have on Tuesday afternoon. A fellow, is where she has finished her 4 years of medical school and is now in her 2 year fellowship, I believe that is right. I might have to go back and change that later. She said that I will have chemo injected into my spine. Holy crap. After we talked about it, it doesn't seem like it is going to that bad... I did have a baby you know. The new research shows that after the IV chemo it is best to use chemo in the Central Nervous System next. We talked about pain. She said that I am super strong and that she has never had someone be able to stand the bone marrow test that way I did, last week. That was good to hear, I tell ya, cause that hurt like hell. This should be a piece of cake tomorrow... well it's today isn't it? 

8 comments:

  1. Glad you had better day,we admire your courage.You are always in our prayers,we love you.Dan,Judy and Kathryn
    judy kelty

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  2. You are a very strong person. I wish you and your family the best. I will keep you in my prays.

    Allist Jones

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  3. Hi Heather ~

    I'm a friend of Shanna's and just thought I'd stop by and drop you a note to let you know I am keeping you in my prayers and sending positive, healing thoughts your way.
    Renae Theiss

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  4. Hey Heather! I just wanted to let you know that my thoughts and prayers are with you and your family. Keep your head up and if there's anything we can do at GA Cancer please give us a call. Also Lauren and I registered for the bone marrow. Kiss that sweet baby for us!

    Erica Adcock
    GA Cancer Specialists
    Erica Adcock

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  5. Been thinking about ya lately, Praying too, love ya, becky
    Becky Hayes

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  6. Heather,
    You're absolutely correct - you have an amazingly beautiful daughter who is being cared for during your short "break". She's radiant today, she looks like you. Evalyn will be taken care of each day by her father and those of us that are so lucky to be a part of your lives. Please don't worry about her any more than you already are - she will be patiently waiting here at home for the day you come back to see her again.
    It's good that you appreciate your Mother and all that she has done for you. Too often we underappreciate our parents, and we don't stop and tell them how much we love them. I hope that you mother can read from your words the depth of your love for her.

    I love you, and will see you soon.
    Carol
    Carol Cooper

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  7. Hi Heather!
    We are thinking about you here at GA Cancer. Hope you get well soon! Several of us are registering on the marrow registry! Our thoughts and prayers are with you and your family.

    Lauren Hendricks
    lauren.hendricks@gacancer.com

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  8. Hi Heather,

    Just wanted to let you know I am thinking and praying for you and your family. I will be checking out your entries ever day to hear from you and see how things are going. This site is a great way for you to share updates and also for us to stay in contact with you letting you know we care and love you. Again our prayers are with you and your family. GOD IS AN AWESOME GOD AND HE HOLDS YOUR HAND.

    Hey if you need me to help write PCH (person centered hospital) plans for the hospital let me know :) I will be glad to help, I can think of a lot that can be added to the plan.

    Our prayes, thoughts and love are with you.

    Diane Lee
    Diane Lee
    dianerlee@windstream.net

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