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, May 26, 2011

I got me a fever, fever in the morning, fever in the afternoon, FEVER in the evenin’, fever all through the night…

(For those of you who don’t know that song, you should Google it.)

TODAY’S BLOG IS ANOTHER GUEST BLOG, WRITTEN BY HEATHER’S HUSBAND, JONATHAN (Heather dictated her thoughts to me, and now I will write them for my wife, in the 1st person, with my own notes added in italics)

My complaints, in this blog and in all of my blogs, are not to gain sympathy or because I’m fishing for comments reassuring me. I’m complaining because this is real life and I want to document what’s happening as it is and not sugarcoat it. Speaking of fishing, I haven’t done any of that, but oh I wish I could. (Me too, because that means more free fish in my belly.)

Dr Khoury had a family emergency and had to leave last night, so he requested I come in yesterday. So I called some babysitters, told Jonathan he can get out of his yard work if he drives me to Emory, and then we got in the car and the trekked 75 miles to Emory. I slept almost the whole way. Jonathan even said I snored. (She did. A lot.)

The good news is, despite the fevers and head cramps, Dr K feels everything is going as normal, and that these things are to be expected and are things that I will just have to make it through.  He did prescribe a new med for me though that will hopefully slow down my high heart rate.

As you know, I have been taking and talking about steroids since November.  I have been jacked up like Barry Bonds [there has to be a baseball remark when talking about steroids, right?]. Now I’ve hit the wall and I’m crashing.  To let you know how bad I am crashing, let’s just say that I was in bed for about 18 1/2 hours today.

Although the sleep is nice, a steroid crash can lead to depression… and this is somewhat true in my case because I was starting to be able to do some activities that I was able to do before.  I was starting to be able to take care of Evalyn, to feel like I’m a good wife (you are, sweetie; you always have been and always will be), to get up early and do my daily devotion and exercise, to work with a clear mind, and to take care of myself.

I haven’t been able to blog about things other than medical concerns… and I have lots on my heart to share… but I guess it’s not time yet. But man, do I have some cute pictures of Evalyn to show you!

(And as a side note, please pray for the patients of Emory. There were about 600 people who were exposed to TB throughout the last 6 months. News just came out about this today… And supposedly anyone who could have been affected has been contacted… and we weren’t)
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4 comments:

  1. AnonymousJune 1, 2011 at 9:34 PM

    Thank you for sharing openly and honestly about your journey. I was diagnosed in Palm Beach, Florida, where I live and teach middle school science, with Acute Lymphoblastic Leukemia, Philadelphia Positive (ALL Ph+) on March 3, 2011. It is one of those diseases that comes out of nowhere, removes you from your life, and you feel like you are running a marathon at a constant sprint. You are a very brave and strong woman, and like me, you have a wonderful support system and God is with you.
    I am being treated in Denver, CO where I have been gone through 4 rounds of Hyper C-VAD with Dasatnib and I am preparing for a BMT on June 16th. I too have been sharing with my family and friends on www.caringbridge.com. It is a free website and I also find it a great way to communicate with my people. My name is Jill Krystel and I have been reading your blog, as you are several weeks ahead of me in your treatment and it is nice to hear someone else's story that is similar to mine. I know we both will beat this and God will continue to give us the strength and the courage we need and heal us completely. You and your family are in my prayers. I rejoice in the battles you have won against the Leukemia and I want you to know that you are a blessing and an inspiration to others including me.

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  2. HeatherJune 9, 2011 at 6:07 AM

    Jill, the hardest is yet to come for sure... please do not hesitate to call me anything as I will know better than anyone. 404-307-5000.

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  3. AnonymousJune 9, 2011 at 12:21 PM

    Thank you. Were you also Philadelphia Positive and on Dasatinib? My blog is at www.caringbridge.org. Page is my name Jill Krystel. As you know I may be out of it for a few days/weeks. You are almost at youe 100 days. I am so happy for you. Stay safe and keep up the fight!

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  4. HeatherJune 11, 2011 at 6:07 AM

    Yep I sure was....I'll be praying for you!

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