Hello all! This week has been really hard so far but is getting better. After chemo on Monday, I started to hurt all over and it when on into the night where I tossed and turned and ended up taking pain medication in the middle of the night. It didn't help. I got up, still hurting, and took Evalyn to my grandparents, hoping the breakfast would make us feel better. It did. I ended up with a little fever and a head that felt like it was going to burst so then I took migrine medicine. I called Jonathan and had him come home from work early so that he would be here when Evalyn got up from her nap because I just felt too bad. Finally, that night I started to feel better and I stayed up way too late because I wanted to make sure I was really tired so I wouldn't toss and turn. I woke up tired but feeling a lot better. I hope to be able to go to yoga tomorrow since Grandma Judy is coming.
The FDA has not approved the medication yet that I need, so we are still waiting for them to sign a piece of paper saying I can go ahead and get it. I'm still not sure about the infusions and if this is suppose to be a cure or if I will be on cancer maintaince for the rest of my life. Right now, I really want to lose this weight that I gained on the steriods but energy to exercise while taking care of Evalyn is really hard. I haven't had much of an appitite lately so you would think I would lose weight that way. Gosh I hope the radiation hasn't messed up my tyroid and I'm destained to be fat forever!! I still have the rash but it seems to be getting better.
Ahhh, Christimas time. My least favorite time of year.... why? Well, between Jonathan and I we have five different families, everyone is stressed out about presents and what to get people, and people drive drunk more. If I could, I would fly my family to Costa Rica and we would just spend time together. Isn't that the best gift someone can give, time? We seem to have more of a balance now and try to see all the family throughout the year so we don't have to feel guilty for missing out on a big get together. As for gifts this year, I've made some, given some to people already, gave out picures, and well, every one else is out of luck I guess. I prefer to get people something when I see and don't like to wait to give it to ya. Plus, I really don't like getting stuff I don't need, do you?
I did end up going to yoga today and it made me feel a lot better. I also had Jonathan's gym membership transferred to me and the lady gave me free child care! Jonathan was unable to really use it since getting his full time job and having to take care of me so much. She had to be on steroids for a long time and said she worked hard to loose the weight. Please pray that neither Evalyn or I get sick from bringing at the gym. I have to get this weight off and get back into my favorite clothes. I know it is going to hard getting Evalyn ready and actually getting there, but I know I will feel better if I do it. I also got the number of a hair dresser that is used to dealing with hair that grows back different... so maybe he can help me have a style or something. I don't even have a natural part anymore and my crown have moved. So weird!
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.
Heather, this is Dan - I met you at Winship a couple of months ago when I was there for my Dr. Khoury appointment. I am curious - do you know which trial medication they are getting for you? I have been following the trial results for these 3rd-generation CML therapies and they show so much promise! Just wondering which one they are considering for you. I think of you & your family often and hope I get the honor to bump into you again at some point. :) You are more of an inspiration than you know!
ReplyDeleteHey Dan, yea I remember meeting you and I was like "wow, I want my energy back" you were moving fast! I think this one has already gone through the trials and is suck at the FDA right now. It starts with a P. I'm suppose to get it tomorrow and I'll post what it is for sure! Thanks for your encouragement.
ReplyDeleteKeep fighting, Heather - you'll get that energy back, and we're both in great hands with Dr. Khoury. Ponatinib (the ARIAD) trial is an extremely promising oral therapy that is proving to be effective against the key mutation that I assume you're battling (T315i). I've been following a couple of others who are on it and they are responding well! I will continue to think and pray for you as you start on the ponatinib treatment.....
ReplyDelete