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, January 4, 2011

Jan 3rd Medical MJ and marshmallows


Hey Everyone,
           Just a quick update on medical issues and general well being. I know that there are others going through this, please comment and let me know how you handle all this! I've been feeling ok the last few days but really, really tired! Sometimes I feel like a marshmallow. I know, what does a marshmallow feel like? Right? It's hard to explain.... kinda like a lump on a log but will less stability. It is difficult to have to tell Jonathan, again, "honey, I have to go lay down." I know he understands but that just means that much more on him with Evalyn, the house, or whatever else is going on. Sometimes I don't sleep when I lay down, I just lay there. I guess marshmallows don't really sleep either. I do some praying when I lay there and some pleading.
           The reason I feel so tired is because I'm anemic. A normal hemoglobin number is around 12 and mine was about 8.9 yesterday. They give me 2 pints of blood when I'm under 8. Basically, when my blood is low like that, I'm not getting as much oxygen and my body has to work that much harder. It is more difficult to concentrate and remember little things. Chemo brain. I have three appointments this week and trying to work at the same time! Jonathan starts school again soon and boy are we going to be busy. Lord, give me extra energy!
           Mentally I'm prepared to return to Emory this Friday for 5 days, emotionally, I never want to leave my sweet baby girl, and physically, well, who can get ready for poison in your body? I am excited that Dr.M, one of the first doctors I had in Nov., will be back on 6E. I really like him a lot because he would always sit and discuss things for a little while. My favorite is when he will say, " Your treatment is going as we wish, but don't think I'm saying that I wish you to be sick, because we don't, I'm saying your responding well, etc" It always cracks me up because I know that he is going to say it. I may play my "near beer" joke on him this trip. I also get to take my new, vintage, luggage to the hospital with me. I will be traveling in style!

In need of IV caffeine, which they do make......
Heather
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18 comments:

  1. AnonymousJanuary 5, 2011 at 3:01 PM

    Just saw your story on Fox 5 and registered for the donor registry. My son just turned 7 months, and you touched my heart, I will keep you in my prayers.
    Babs Rennow

    ReplyDelete
  2. UnknownJanuary 5, 2011 at 4:25 PM

    Keep fighthing!! I am praying for you. I was diagnosed with a rare type of Lymphoma last May. The Fox 5 segment captured my heart. My youngest child just turned three yesterday. Every birthday is a blessing. Keep that beautiful smile. By the way, love your hats.

    Amy Adams

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  3. AnonymousJanuary 5, 2011 at 7:42 PM

    Hey there Heather, I also just seen your story on Fox 5 Alanta. I don't know how to go about it but I am already a member of the national marrow donor program. I'm not sure how long it takes them to get through the many members registered. My name is Richard Linscomb my id number is 0713-4042-6. not sure if this can be any use and don't know if I would be a match or not. My wife suffers with CML(Chronic Myeloid Leukemia) and I know the scare of cancer in general. I know that my blood type is B Positive. Again not sure if any of this will help but if there is anything that comes from this you'll atleast have one more supporter on your journey. You can reach me at natural_born_kracka@yahoo.com or 678-975-4853. and my wife's number is 678-425-5260. I know she likes to talk too. So hopefully something good will come of this and I know your story touched both mine and my wife's hearts and we wish you well.
    Sincerely,
    Richard Linscomb

    ReplyDelete
  4. Crystal ParrottJanuary 6, 2011 at 3:53 AM

    Your story has really touched my heart. Most of the time I take things for granted, I find myself less and less thankful for the simple things in life. After hearing your story this morning I registered in hopes to help you or someone in need. Stay strong, keep faith, and thank you for being a strong beautiful woman.

    ReplyDelete
  5. Dawn WilliamsJanuary 6, 2011 at 4:40 AM

    Hi,my name is Dawn Williams and I saw your story on Fox5 this morning. I have two children myself and can't even begin to imagine what you are going through. After seeing your story, I clicked on the website listed on Fox5's website to become a donor. I filled out the information, but at the end, it said that it cost $52 to order the swab kit and be added to the donor registry. I'm a stay at home mom and my husband is unemployed right now due to company downsizing. We barely survive on his unemployment benefits. But I wouldn't quit. I saved all of the information that I filled out and as soon as we get out income tax money, I'm going to send off for that swab kit. You just hang in there and take care of yourself and that sweet little angel. You will be in my prayers.
    Dawn Williams
    Eatonton, Ga.

    ReplyDelete
  6. Shanna FreemanJanuary 6, 2011 at 5:02 AM

    Look Heather, you are already getting comments from that segment! You may want to add a new entry welcoming your new readers.

    I hate that the last person got the pop-up that there was a charge for donating. =/

    ReplyDelete
  7. AnonymousJanuary 6, 2011 at 5:05 AM

    Heather I am resending this because I originally entered it under a November entry and don't know if you are alerted to it.

    I am currently an ALL/BMT survivor. My transplant was in Sept of 09. I returned to teaching in Aug of 10. I am doing great but it is always on my mind that this may not be over. I can TOTALLY relate to you on so many levels. It seems our sense of humor is similar and we are both Christians with families. I am 46 and have three children 16, 13, and 11. I would love to talk. There are so many times that I would like to talk about what has happened but I think it makes a lot of people uncomfortable. I see that you will be at Emory for five days starting on Friday. I would love to make it up but not sure that I can squeeze it in. If you are interested in talking please email me at annschmitz@charter.net. I will be praying for you and your precious family.
    Ann Schmitz

    ReplyDelete
  8. AnonymousJanuary 6, 2011 at 5:29 AM

    Heather.... I just saw your story on Fox 5. I have the number to Donate. I will be calling as soon as their office opens. I hope there is an option to choose for my marrow to be compared with yours ASAP! I want to be screened right away!

    Much Love!!!

    Kevin
    KevinKerley@Live.com

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  9. EmilyJanuary 6, 2011 at 5:41 AM

    Heather, Like most on here I saw your story on Fox 5 and just wanted to let you know that I am praying for you and your family and that beautiful baby girl of yours!

    ReplyDelete
  10. AnonymousJanuary 6, 2011 at 7:06 AM

    Heather, I saw your story on Fox5 and would like to help. My heart goes out to you and your family. I feel it would be such an awful thing to not be able to experience the joy of watching your daughter grow into adult hood. I have two beautiful adult children and now a beautiful grandson who is 20 months old.

    Please contact me at implausibleess@yahoo.com and we can discuss if there is a quicker way to go about finding out if I would be a match for you.

    Karen

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  11. AnonymousJanuary 6, 2011 at 11:46 AM

    Heather, I also saw your story on Fox5. My heart goes out to you and your family. I will keep you in my prayers.

    ReplyDelete
  12. Carrie ChathamJanuary 6, 2011 at 11:56 AM

    It is such an amazing blessing to see all these people that saw your story on the news! Now the atl area, (and soon, the rest of the world!) will all know how strong you are, and how hard you fight to live a normal life...You are an amazing wife and mother Heather...Evelyn is blessed to have such a great mom and dad! I am so glad you had the opportunity to be on the news and get the word out about donating to be the match. You always put 100% into everything i've ever seen you do! I even helped an old friend of yours/and mine too, to find you again through fb...You should have a friend request from her now! Praying hard every day,
    Carrie =)

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  13. Be The MatchJanuary 6, 2011 at 2:25 PM

    Thank you for sharing your story Heather. We posted your story on our Facebook fan page-- visit http://www.facebook.com/BeTheMatch

    ReplyDelete
  14. AnonymousJanuary 6, 2011 at 3:18 PM

    Dawn Williams said...

    hey Dawn it does NOT cost to send in the kit.

    http://www.marrow.org/JOIN/Join_Now/join_now.html

    This is the website that you go to to request a swab kit. The kit is 100% free and you just might save Heather's life.

    Thank you!!!

    ReplyDelete
  15. WildAngel1980January 6, 2011 at 3:21 PM

    Hey Heather,

    Be watching the mail. I sent you 4 more hats. :o)

    Keep your chin up! I am still advertising for you. :o)

    Nicole

    ReplyDelete
  16. UnknownJanuary 6, 2011 at 4:33 PM

    Hi there! I posted yesterday and am sure you are spending time with your precious family. Praying for you and your upcoming hospital stay. May God uplift you with His righteous right hand. Stay strong. You are a winner and you will WIN this battle. If you feel like it sometime, get in touch with me. If not, I will understand.

    Amy
    ama960008@gmail.com

    ReplyDelete
  17. AnonymousJanuary 6, 2011 at 8:04 PM

    Hi,
    I just wanted to let you know that your story was featured on Be The Match's Facebook page, which is how I came upon your blog. I hope that a match will be found for you and that your recovery goes well.
    Dani
    Austin TX

    ReplyDelete
  18. nat @book, line, and sinkerJanuary 7, 2011 at 6:02 AM

    hi heather,
    found your story through be the match. my sister (33) was diagnosed with ALL in february 2010 and also needed a stem cell transplant. i'm her only sibling and wasn't match, but a match was found for her through the be the match registry a few months later.

    she's 6+ months out from transplant and is doing really well. there are some photos of my sis before, during, and after her ordeal in a post i wrote last month on my blog. maybe taking a peek will help you see light at the end of the tunnel. (http://booklineandsinker.com/2010/12/08/at-a-loss-for-words/)

    i'm sending sincere wishes to you for a good marrow match, full recovery, and long healthy life.

    you should know only good things. :)
    natalie

    ReplyDelete

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