Good Morning!
I actually feel better than I have felt in a really, really long time at the moment. This is because I'm on an amount of steroids that no one should be allowed to take. I was hoping we would we be done with them so I could get the crash over and start to start over trying to just be normal. Dr. K said that we are not finished with them yet. He gave me a scrip for a 100 and said that we would be off and on them. Well, I've learned to ride the roller coaster with this crap, except most the stuff I would normal do, I can do. Steroids make me want to break the rules, but breaking them this time could kill me. So, I going to force myself to wear the blue mask and take a walk today and still try to find an exercise bike to borrow. I'm also going to do some cleaning out of the laundry room and organize some things, so another part of the house can be organized and so on. That's kinda breaking the rules because of dust, but I'm going to wear a mask and use dust wipes. Yea, Yea, what do you want me to do, I have to do somethings or I'm going to lose it.
I had a appointment yesterday and boy did we wait forever and ever. We did meet a couple that lives in Cartersville and knows some of the same people we know. They were there with their son and he has throat cancer and they were expecting some big news today. The poor mom was so nervous. We exchanged numbers and I hope my Mom is going to give her a call so they can talk. I think Mom needs to talk to another mom also. My appointment went well. I still have the rash, the cough, and ummm abnormal bleeding (girl stuff), and I have a weird strip on my head but that is no big deal. I left with 4 new medications, some to replace, some new. It is so weird how much time I have to spend sorting medications, putting on creams, taking care of my line, nose sprays, inhalers, taking my temp etc. Should I really have 4 different creams at age 30 that are not beauty creams at all? I don't think so. Beauty creams..... Ha. Hair Spray..... Ha ha. Make up..... forget about it. I have to go back to Emory Friday... crap that is tomorrow...all day. I'm starting some new drug and they to watch me and do an EKG a little while after, do labs, see the Dr. again.
I know two people that are not doing to well with their transplant. One is named Jan, she is in an induced coma right now while they are trying to figure out what is wrong with her lungs. She has two children and is around my age. I believe she had her BMT back in Jan or Feb, I forget. Another girl I know, D, not sure if I can share her name yet, is on day 14 or 15. She has been in a lot of pain but is hopefully getting better, I hope to hear back from her soon. My friend Amanda seems to be doing great and I hope to visit her tomorrow while I'm stuck at Emory. She doesn't have to have a BMT but is finishing up her chemo soon. I also spoke to Olan this morning. If you have been reading the blogs, your remember that I met him and his wife, Marilyn, back in Nov. She was waiting for a BMT. She passed away back in early March. Olan said that he is doing ok and is excited that I invited him to come fishing at our lake.
On the home front, we continue to be blessed with what we need when we need it. Jonathan passed his test but has been so busy on other stuff we have barely been able to see each other.Hopefully this weekend we will be able to spend some time together. Mom has been a huge help driving and taking care of everyone. Evalyn continues to amaze me with how much she is growing up and really want to just walk. We are having to set limits and she is not liking no, but rules are rules and by God we are sticking to them... even when I'm tired, sick, etc (I'm talking to myself).
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 that you're hanging in there. No way can you take steroids and be expected to just sit there and do nothing!
ReplyDeleteI am glad you are in touch with other cancer patients and their families. I'm sure it would help your mom to hook up with other moms who understand what she is going through.
I understand about setting limits -- Emilie is really testing boundaries now. It would be a lot easier to just let things go sometimes, but you then they will expect you to do that every time. Consistency is key, but man, sometimes it is so hard. I say "no" a lot and boy does Emilie get angry! But it's for her own good. You know, like trying to stop her desire to dig in the trash can. At this age re-direction is really the way to go.
Yep, no one said parenting was easy! Why retrain when you can train right the first time is how I feel... but it is going to wear me out! Trash can... we will get to that one soon. This girl will be walking before we know it.. it must the be extra weight :)
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