Hello everyone,
I went to Emory on Wed and my 2:30pm appt turned into a 3:45pm appt, then traffic, and I drove myself, so I think I'm just recovering to give updates. My blood work is looking good. He is going to reduce the steroids this weekend and it turns out the the rash was GVHD but the headaches he doesn't know about yet. It's probably the oral chemo since I've had issues with it in the past. I tried to get around the not eating or drinking anything with water for 4 hours, but I didn't win that one. I asked him at what point do we decide I have Chronic GVHD and give up on the steroids and just deal with it. He said I do have Chronic and we can't let it get out of control. I asked if I will be on steroid on and off the rest of my life, and he said " We never know what to expect with you." I am a strange case, he said. He said that it should be a low dose at least. Some how, I lost 3 lbs this week, despite the steroids! I weigh less than my brother now, but I still can't get my rings off. It has been nice not having as much pain, due to the steroids, but I don't sleep well and they can't be good for me. He think I may be able to change to every other week soon but said that he has to keep a good eye on me. I got my FISH blood test back today about the Philadelphia Chromosome, and it was negative. It's not quite as good as a bone marrow test, but less painful. I'm sure I will get one on those soon enough. I forgot to ask about gardening this spring, but I still have some time. I didn't ask about the trip to Ossabaw Island I'm planning in April either, but I'm not going to, I'll be with two nurses (mom and sis) and they can come get me by helicopter, I should at least be able to ride in one of those. Oh yea, I got my third picc line out, and they did it right in the office! It was wild to see this long thing come out of my chest and it didn't even hurt! It will be much easier, and much more likely, for me to take a shower.
I've been working out at the gym doing Zumba and did a light weightlifting class tonight. Then I'm doing the cancer yoga on Thursday at the hospital and now the lady at the senior center said I could come to their classes for free! Maybe since I'm going through menopause, they think I'm old enough. She asked if I would be comfortable around elderly people, and I told her that she doesn't know where I live! I went to a bridal shower for a 75 year old last week. Yes, I was the youngest there, but not the silliest. When I started working out I almost killed myself because I was trying to do the whole class, but now I'm just doing half the class until I get stronger.
I got my hair cut today. I'm ill at myself for not taking a before picture because I really looked like a lion. A friend of my secretly paid for my appt before I went. Wasn't that sweet? I also ran into a friend at the store who said that she ordered me a music stand because I had said I needed one when volunteering somewhere. I just can't memorize music anymore. I'm in the process of learning Carol King's "Way Over Yonder". I was also taken out to eat yesterday by a friend and someone blessed us with some money. It's sad that Etta James died today. Reminds me of my first wedding because I sang one of her songs. That was a fun wedding, even ended up in the pool, wedding attire and all. I have a loved one that is trying to quit smoking and he is doing great!
I'm still having headaches and back pain, but other than that I'm doing really well right now. I even cooked dinner once this week and worked on a friends painting for her baby room. I better get that done while I'm still on the dope, gonna crash soon....
Take Care,
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.
Friday, January 20, 2012
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FISH Negative! I am so happy to hear that, Heather. Ponatinib is doing the trick. :) Keep it up...
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