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 7, 2010

Nov. 7th Emory is AMAZING


Good day everyone!
Last night was pretty rough but this chemo is almost done for now so it will get better. .
* Medical MJ- I had a great mini meeting with the doc early this morning... wasn't really on my time schedule.... but at least I was ready. Its Sunday, he wants to get home to his family today, so he starts early. He thinks I'm funny, I think he is awesome. Some points....
1. We discussed the upper body stregth and he said not to worry about it I will be fine with evalyns weight gain... I'm still going to try to do some exercises though, because I like to.
2. We discussed the pic, they don't do ports here because of risk of infection, sounds like a good reason to me. The pic is annoying because of clothes. I'm going to get someone to help me cut some tank tops and sew a button on the right side (kinda like breast feeding tops) So when I'm connected to the chemo I can at least change my shirt if I want.
3. We discussed some side effects and medications... I think we got it under control. He was very helpful with my concerns.
4. Last night was apparently the worse chemo that I will get this round. He said they called it liquid gold (changes the pee color) and also because it was so expensive that no one could hardly afford it.  He thinks that is why my tummy hurt so bad. I'll be done with it at 5pm tonight. :)
5. We discussed if there could have been anything different I could have done, or the docs could have done to keep me from getting to this point. Not really. If I would have taken a higher dose of medication I may could have held on for a little while longer, but it would have happened anyway. Thank god Evalyn is safe and healthy. Would it have been better for this to happen when Jonathan finished school.... maybe..... maybe not, right now Wallace and Chloe miss me more than she does.... she just a happy little baby. It would be so much harder on her if she was older.
6. I didn't get to the wine.... I'm going to get him to like me a lot first then ask if I can have some :)
7. He was not concerned with the minor heart scare last night. He said that they go way overboard here on everything so I'll get used to that and it won't stress me out as much. I love this doc. 
8. He also said not to worry about eating/ not eating/ making myself eat etc. He said that everything I have been told about eating to get better, etc etc is wrong, they figured out. He said to eat when I'm hungry, eat what I want, don't stress about it

*Staff/Emory*
1. The staff here are amazing. I have some of the best nurses. techs, cleaning ladies, docs, food services, etc etc etc   This hospital is amazing. If any of you every need to give money away... give it to Emory.... or me.... then I'll give it to Emory... minus 10%.  
2. Last night, my nurse went above and beyond and changed my clock for me. I didn't even ask her. She was just being nice. Then the man came by this morning to see if my clock had been changed. He seemed so happy that someone did it. He was an older man, didn't get his name. He probably has a zillion more to go today.  My cleaning lady today, Viki, is so sweet. She did such a great job. She made me laugh too. I told her to watch out for the gorgous red head today.... that my sister :) Lavena, my tech, is in pre pharm right now, and her sis just passed the bar, her brother is going to be a dentist. She was born in Guyana where the Jonestown thing happened about 30 years ago. That was when the crazy americans went there and killed themselves with koolaid. I didn't know much about that until today. My nurse, Sharon, is amazing. She is so informative in a " i don't have time to waste" but " I have enough social skills to give you some time" kind of way. You all know I can appreciate that because if there is one thing I can stand is wasting time!!!! Sharon got caught by the time change... hell... they should have given me to job to make calls this morning, I was up :). She wants to have her own group home for people with DD.... well well... did she run into the right person to help her out or what???? 
*Personal*
1. Try wiping with your other hand for a day, just do it.
2. I'm learning to let some stuff go. I dropped something and couldn't get it. It amazed me how much that bothered me so I let it bother me and let it bother me, just to screw around with my own head. By the time, it got picked up, it didn't really matter any more. Today I got my roomed cleaned, I pittleld around  like I like to do, things to send back home, etc,  and right now everything is where I want it.  That will change later and I'll get up again. It's good for me. I'm working on being calmer with the beeping machine when it goes off. I gave it 5 min yesterday before I called. It really needs a remote so those of us with our senses can mute it and call the nurse without her having to feel like she has to drop everything. Well it's off now, thank god. 
3. I have always hated being able to hear everything, but you know there is a wonderful Emory university clock outside that I can hear. It's playing now, it's so lovely. 
4. I know that my relationship with God is growing like crazy and it's so cool. His wisdom is so amazing it is blowing my mind so much right now, that I can't hardly write about it. I will be able to but right now his presence is so thick over me and in me, I can't put it into words. 
5. I have the most amazing people in my life, I'm soooooo lucky, Don't you dare feel sorry for me. My eyes have been opened. My heart is glad. I'm ok. 
6. fyi, don't even think about calling up here to the hospital to my room... I unplugged that thing the first day. I'll return calls I feel like it. I need to save phone calls for my friends at thompson farm that don't do computers. I miss you my neighbors!!
7. I need to find a way to connect to my peeps on my caseload. I can't make that many phone calls but I want the out reach to be personal.... not sure what I'm going to do. I know they miss me too, they are my fan club:)
8. I really want to be able to go back to work, well, I can't go anywhere really, for a long long time. But I can work independtly from a computer, like I have been of course. You can't always get what you want.... but you get what you need. I just want to be able for my sweetie to finish school... Lord, I hope that is in your plan. 
9. Thank you cards are not going to happen.... It's just not. I thank you I thank you I thank you!!!!!
10.. There is so much I want to do, so much I want to change, Sean's devotional this morning hit the nail on the head for me... I can't do it all, I can't change it all. God will lead me to where I need to be and what I need to do. Relax, Heather! i'm still going to write a letter about not being able to vote at the hospital.

** Dream**  Sorry folks, I can't share it with you yet. My bro gets to hear it first. He is coming tomorrow. Thats what God said, that's what I'm doing.... 


Got to go.... I have to make a mixed CD for my baby and hubby since I have stolen all the itunes.....Well I don't have to, I want to. My little girl misses her music... and well I just stole jonathan's computer  all together..... sorry baby. I love you!

9 comments:

  1. We enjoyed our visit with you. You looked so much better & you have shown such grace in the face of all this. Thinking of you. Mike had his big oral surgery today & I drove him there & home. He's so cocky tonight but tomorrow is going to be another story! All that anesthesia is going to be worn off. These posts are so good. I know how you're doing & I'm not bugging you. I'll talk to Kim about a schedule to visit so we don't wear you out. It's time for my car to be serviced & I refuse to drive that truck of Mike's. It'll probably be toward latter part of wk or when your Mom co-ordinates it. We love you very much. Aunt Judy & Uncle Mike.
    judy warren

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  2. Heather: My husband, Tony DeNoble, worked with your Dad at Unilever in Cartersville...several years ago, but they remain good friends. I wanted to let you know, that I have put you on the best prayer list ever! We have a group in our community called the "Good Samaritans". The entire group is praying for you. I also wanted to let you know...that my sister, Suzi, was diagnosed with (and I hope I spell this right) lymphatic lymphoma. She was given 6 months to 5 years to live. That was 27+ years ago...and she is coming to visit me this Friday! That is called "prayer". It works! I am so blessed to have her....and your family will be blessed to have you, too. Keep that wonderful spirit that I see in your journal entries. That is half the healing right there...you leave the rest to us.
    We don't have to know you personally to love you so!
    Hang in there baby! The best is yet to come!
    Love, love, love....Cheryl & Tony DeNoble
    Cheryl DeNoble

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  3. Hey Heather!

    How could you possibly think we could forget you!? You are continuously in my thoughts and prayers!! Besides, you are unforgettable (in a good sort of way)! I hope you can feel the love and prayers because they are GREAT in number!! I read your journal and was so blessed by your acknowlegement of growing in God's wisdom. He will be your rock, your strength, your shelter. When your mind and body are weak, you are made strong in Him! I want to share this scripture:
    Bless the Lord, O my soul, And all that is within me, bless His holy name. Bless the Lord, O my soul, And forget none of His benefits; Who pardons all your iniuities, Who heals all your diseases; Psalm 103:1-3.

    Love you and praying for you!
    Dianne
    Dianne Bentley

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  4. Heather i love you so much! GOD IS WORKING THROUGH YOU LIKE CRAZ y.............For several weeks now i feel god is wanting me to pray over you. WHEN YOU WOULD
    LIKE ANDY AND I TO VISIT LET ME KNOW IF WED, OR FRI. IS OK.there are so many verses that i could say to you but the touch of god id so much more powerful shhhhhhhhhh! Ya know that i have always had a special bond with you.


    Love,

    Aunt Lisa

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  5. Hi Heather, I worked with your dad at Unilever and I just wanted to tell you that you and your family are in our prayers. I am so glad your baby is doing ok. Take care of yourself always remember that God is in charge and he will take care of those who love and believe in him. Blessings alway, Sharon Robinson

    Sharon Robinson

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  6. Heather,

    I worked with your dad at lever for many years. You are in our thoughts and prayers. God tells us in Psalms 46:1

    God is our refuge and strength, an ever present help in trouble.

    No one else can be a PRESENT help. God is with us always. We never have to call and ask for help. HE is there ... a Present help. So know God is with you through this jouney.

    We are praying,
    tsat
    Tommy Satterfield

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  7. Hang in there Heather. Stay positive, think good happy thoughts and know that many of us are thinking and praying for you.
    Love,
    Ted
    Ted Garner

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  8. Heather your journal is so uplifting. It made me feel like I had been to visit you. I am glad you are able to be strong about it, but it's still not fair. I tell the Lord every to take that leukemia away from you and give it to me, but He's not listening.
    Frank Reid
    ffwwrr@mindspring.com

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  9. I just wanted you to know how much I enjoyed talking to you this morning on the way to work. It made my day start off so much better. Evalyn reminds me so much of you when you were a baby. So laid back and happy. I don't think thats something that you teach a baby, I think they are born with that disposition. You are very special person. I am glad that you are looking for the good in this. God is in control. I like what you said "Let It Be" Guess we should make it the theme song. I miss you and love you so much. Hope to see you this afternoon.
    Kim Reid

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