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.

Saturday, November 13, 2010

Nov. 13th The MASK and the LAUGH


**Medical MJ** Just took a crap load of medications... steroids.... yuck. I'm starting the chemo at 11 am but it is just one bag and I won't be hooked up all day. I spoke to the doc about going home and it will be sometimes around Thanksgiving, maybe the day before, he can't tell me for sure. I will go home 3-5 days and the come back for 5 days. Then have to do chemo 2x per week when I'm not here. Hopefully, I can do once here at Emory and once in Athens.... Please God. The 5 day getaways.... will be every 21-28 days... so actually less than a lunar month. I'm going to get real good and bring exactly what I need. I'm going to start making a list. I still have not asked what happens if I do not find a donor. I would like to know. I will ask but I try to only discuss 3 things at a time with the doc, so that he likes me. I got the ok to go to the museum down the road as long as I with someone and wear my mask. Usually, I follow my Poppa Bill's advice on things and ask for forgiveness instead of permission. I walked was further than than that with my mom the other day. In this case, I asked if they thought it was ok as a courtecy since they are working so hard to say my life. I really want to be a good patient... but I am a rebel at heart. Didn't get to the wine.......

** THE MASK** The mask that my cuz Andy brought is the most wonderful item in the room, right under the i pod. I put that on a 6am and slept till 8am.... I felt like a movie star that had a couple martini's last night. Then... room service.... 3 pieces of bacon, just like I asked.... not so bad.

**EVALYN's LAUGH** She is really starting to giggle and laugh more... it's like music! I was able to hear her over the phone this morning. My Dad was making her laugh so loud! She is staying at my mom's this weekend, WITHOUT me or Jonathan. Holy MOLELY. That's huge.... I know that they will do a great job and respect my wishes. Right MOM and DAD? I'm going to see her tomorrow. I'm trying to prepare myself. I debate on whether to have her at the hospital at all, since if she gets sick we can't be together at the house. I used to think I wanted to be an actress... so if I know I have to deal with something hard... I go ahead and imagine what it is going to feel like... maybe cry even... like practicing. I did that before I went outside that day...and I didn't cry. Not sure if it is going to work with this one. This is BIG. 

7 comments:

  1. Hey girl! Gonna try for Mon. now & if anything happens with that let me know. I know it's a small room & too many people can be overwhelming. I just want you to know, you're in my heart & my mind all the time. I love you very much. Make sure you read what your Uncle Mike wrote about the marrow bank. He made me feel better!Praying for you. Aunt Judy
    judy warren

    ReplyDelete
  2. Okay, So I know I ramble a lot in my replies to your posts, but this one isnt really so much a reply as just wanting to tell you something! =) I was trying to think of how to explain this but I know you will understand...When I first heard news of what was going on with your life, I cried and cried for you and your family. Even though I havent seen you in years and years and you were technically friends with my brother and not me, and we just kinda saw each other in passing. I prayed like crazy every day, and just hoped that it would do something. Well God came to me and told me that I needed to keep contact with you and keep up with whats going on and help when I could with whatever I could...Thats one reason I signed on as a donor, but I would love to help anyone that I am a match for, I know there is a slim chance of us matching but it would be awesome wouldnt it? ;) Well I wanted to tell you this because its really hard for me to figure out what exactly God wants me to do, we have a great connection but I have always had a hard time understanding things like this, I just know he wants me to do something. I was compelled to tell you this because of the reasoning in it, not for any thanks or recognition or anything like that. I hope it all makes sense cause I am soooo bad about talking in circles! God is a constant in my life now, and he has blessed me in so many ways it is unbelievable! I will have to tell you my story one day. I know this is probably wearing you out to read all this so ill let ya go! =) Just wanted to chat with you about it a little and let you know. Love you! I love reading your posts on here btw, you are so inspiring to me!
    carrie chatham

    ReplyDelete
  3. Hey Heather,

    Well I have to say I am so sorry to hear all this news. I had no idea you were having such a rough time. I see your mom at work every now and then and the last time I saw her she said you and the baby were doing good. If you need anything please let me know Emory is not far for us at all. Sounds like you are good spirits and we wish all the best for you. I cant imagine how hard it is to be away from that little girl. We will keep you in our thoughts and prayers. Hope you get home to enjoy a nice Thanksgiving with your family. Again let us know if you need anything.

    Love,

    Crystal and Terry
    crystal nuss

    ReplyDelete
  4. Sweetie;

    Your chances of getting a bone marrow match from the donor bank are actually two times better than finding a match from a blood sibling; pretty good odds, if you think about it. Remember, there are 3-4 million people in the donor bank...that's a lot of folks. The only downside is, that because there are so many people in the bank, it takes a long time to search for potential matches.

    Don't be afraid to ask your doctors questions; they are not too busy to address any and all of your concerns and they are working for you, not the reverse. Most docs want their patients to understand their treatment plans and options.

    On the other hand, don't be surprised to get vague answers to "what if" questions; there are no crystal balls and doctors don't like to deal in hypotheticals. There are too many variables. Every patient is different and the same disease or disorder behaves differently in different individuals. This is where a patients' attitude, personality, support systems, faith and other unmeasurable and unknowable factors (i.e., God and prayer) seem to come into play.

    Love from one part of your large support system,

    Uncle Mike
    judy warren


    SATURDAY, NOVEMBER 13, 2010 1:53 PM, CST
    Heather I love reading your stories. I'm glad that you are keeping your spirits high and have such a positive attitude. You little lady is fitting in just fine around here. Dad says that he wishes we could keep her all the time. He said thats what life is all about! So cute! I love and miss you....see you tomorrow.

    Jennifer Reid


    SATURDAY, NOVEMBER 13, 2010 11:35 AM, EST
    Heather, I absolutely love your blog page. Your dream sounded intense but good. The Lord has really given you a lot of insight through this whole process... maybe even before, I just didn't know it because we don't see each other anymore:(
    I miss you, girl! I love you very much, and I am so happy about the work that God has done in both of our lives....its a process you know? I think Justin and I are going to just go ahead and sign up for BetheMatch. To be honest, I'm not sure that I really want to be a match for just anyone at this point, but we want to try and help you any way we can so we are just going to go ahead with it through the website. Do you have anyway of checking the testing results of your friends and family? Justin's schedule is changing next week and maybe even again at some point soon. We aren't sure what we are doing for the holidays....but my plan is to come with the family or alone to see you. I know I will need to coordinate this with your treatments. I will keep you posted as I want to make this trip sooner than later. Love you much!
    leslie weaver

    SATURDAY, NOVEMBER 13, 2010 7:30 AM, EST
    As a person who has always had very vivid, realistic dreams...I tell you, that was SOME DREAM! I have had dreams that have stayed with me for years, changed the way that I thought and acted about various things...and I definitely believe that they can have meaning beyond just being random mixed up crap in your brain (although sometimes that's all they are, too). Yours certainly did!

    Andrew says that you were feeling good yesterday when he and Mom visited, playing your guitar, etc. I am so glad. I hope this weekend is a good one!
    Shanna Freeman

    ReplyDelete
  5. Sweetie;

    Your chances of getting a bone marrow match from the donor bank are actually two times better than finding a match from a blood sibling; pretty good odds, if you think about it. Remember, there are 3-4 million people in the donor bank...that's a lot of folks. The only downside is, that because there are so many people in the bank, it takes a long time to search for potential matches.

    Don't be afraid to ask your doctors questions; they are not too busy to address any and all of your concerns and they are working for you, not the reverse. Most docs want their patients to understand their treatment plans and options.

    On the other hand, don't be surprised to get vague answers to "what if" questions; there are no crystal balls and doctors don't like to deal in hypotheticals. There are too many variables. Every patient is different and the same disease or disorder behaves differently in different individuals. This is where a patients' attitude, personality, support systems, faith and other unmeasurable and unknowable factors (i.e., God and prayer) seem to come into play.

    Love from one part of your large support system,

    Uncle Mike
    judy warren

    ReplyDelete
  6. Heather I love reading your stories. I'm glad that you are keeping your spirits high and have such a positive attitude. You little lady is fitting in just fine around here. Dad says that he wishes we could keep her all the time. He said thats what life is all about! So cute! I love and miss you....see you tomorrow.

    Jennifer Reid

    ReplyDelete
  7. Heather, I absolutely love your blog page. Your dream sounded intense but good. The Lord has really given you a lot of insight through this whole process... maybe even before, I just didn't know it because we don't see each other anymore:(
    I miss you, girl! I love you very much, and I am so happy about the work that God has done in both of our lives....its a process you know? I think Justin and I are going to just go ahead and sign up for BetheMatch. To be honest, I'm not sure that I really want to be a match for just anyone at this point, but we want to try and help you any way we can so we are just going to go ahead with it through the website. Do you have anyway of checking the testing results of your friends and family? Justin's schedule is changing next week and maybe even again at some point soon. We aren't sure what we are doing for the holidays....but my plan is to come with the family or alone to see you. I know I will need to coordinate this with your treatments. I will keep you posted as I want to make this trip sooner than later. Love you much!
    leslie weaver

    ReplyDelete