Wow, that last one was depressing. Hopefully, I didn't turn anyone off... my mom said that maybe she should get out of the kitchen. We found out some news today at Emory. The "booster shots" are not crucial to my continued remission so that is good because I still have Graft vs Host and can't get them anyway. The more sobering news is that this study drug, ponatinib, is the one and only answer at this point for me to live long term, besides a miracle, which I'm told do still happen. I'm very lucky that this is happening now rather than a couple of years ago, otherwise, this med would not be available to me. I started taking it again last night and got sick to my stomach 3 times, so lets hope that was just a fluke. They raise my steriods again, so I'm not hurting as much today, but it's not the going up that stinks, it's the coming back down. I guess I'll enjoy the ride as much as possible. I've already started 3 projects in my mind but know better then to just take them all by the horn. I still have a baby gift to work on and the baby was born in Aug!
Our weekly bible study group really encouraged me last night. I remember when the cancer progressed in Nov 09 and how at peace I felt and how much I felt that God has a plan and he was going to use me in an incredible way. And he has. After the ups and downs, stem cell transplant, steroids increase, crashes, relapse, a baby, I think I'm just so tired and God knows this... so maybe I should give myself a break about not doing more and just be prayerful for the times God calls me to speak out or do something.
In the area of dying, well, I decided all I can do is be ready and that may decrease some anxiety about it such as my wishes, our will, etc.
Don't worry more cute pictures of out daughter coming soon. I know that's why ya'll read this blog.
Love, Heather
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.
I'm glad you got some encouragement! and I don't think God expects you to be doing anymore than you are doing- being honest and real, and still showing an amazing faith through it all. Your story has already impacted so many people, and you will continue impacting people just by being you and sharing your thoughts and experiences. We are praying as a family for you every night- love you guys! ~Lily
ReplyDeleteI so appreciate your honesty!
ReplyDeleteYour strong faith will continue to guide you.
Love you.
Susan