I pushed the envelope on Wed a little by asking questions with Dr. Khoury's answers being, " no tattoo", "no travel by plane", ha, we have enough frequent flyer miles to go anywhere and the worst news " no gardening till I'm off the steroids for a year." That was the heartbreaking. I really thought that I would be able to garden this spring and summer. I could be on them forever. I cried later when I got home. For those that don't know fungi spores are very dangerous and lead to fungal infections, which is very hard to treat and could kill me. I told Jonathan it would be like if he was told he could hear no, see no, or speak no sports for a year, or even for the rest of his life. Gained the few lbs back that I lost, blahhh.
My cuz Andy made some awesome lamb gyro wraps for lunch before he drove the rest of the way to Emory. We stopped and looked at new tennis shoes and I think I found some that work for me. I really was past due, having the same pair for 5 years. Maybe I'll be able to do the jumping jacks in zumba class.
It has been a rough few days. We were going back down off the predizone and the GVHD rash came back bad. So I had to go back up to 30mg of steroids, then it still got worse, so today, I'm on 80mg and we will reduce from there. I thought "well, at least I will get a lot done today", but I didn't, my body was exhausted from being a yo yo and I came home and went to bed. I've also had the irritating tickle cough return but not coughing hard enough to work on my abs.
Good news is that the meds are still working and they cannot "detect" any leukemia cells. Dr. Khoury just published a paper about the prognosis of cml relapse after BMT. This was before the new oral chemos. So in a few years my info will help determine the outcome of how well these oral chemos help those that have relapsed.
I'm excited about this weekend because Jonathan has a surprise mini vacation for us. Funny, before cancer, it would have drove me crazy not knowing what we were doing or where we were going. Now that I have to take life so much slower, it doesn't bother me in the least. My rash is still not better so there is a possibility I will have to go to Emory before we leave, but I hope not. I'm not wishing for snow.
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.
Little ups and downs, but hopefully all on the way up. Sorry about the tattoos, flying and no gardening. But the time will come before you know it. :)
ReplyDeleteI know how much you love gardening especially so that was awful to hear. Someday...xoxoxo
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