Hi Everyone,
I just want to first let you know I'm giving God the praise and glory for everything wonderful that has happened in the last couple of days since I'm about to say I a lot. As for a couple things I'm really running my head into, I'm still working on those...
This weekend, Jonathan, Evalyn, and I were alone and we had some time with family and played a lot. I was able to use my steriod energy to get some things done... yea yea.... you shouldn't be doing this and that. Well, going through and organizing my closet and getting rid of stuff from the laundry room I have been wanting to do since 09, is not on the list! We also organized the huge amount of medication I have acquired and will be on and off. It looks good, I'm riding the wave baby, and moving to the next room, who knows what will happen when I come down! I was able to take care of Evalyn more and more this weekend, not that I didn't have a few total crashes after, but sometimes I just crash. That's why I still need help. Jonathan did some safety things for Evalyn around the house, how helpful!
On Sunday night, it was the first night that I have slept more than 4 hours at one time in at least 4 weeks. It was wonderful. Jonathan even had to wake me up and Evalyn had slept 15 min later than normal. Jonathan got up with her and I went to my Poppa Bill's to start my first day back at work. I say "day", but it was a very short one. They fed me some good food of course which is wonderful because at this time I have to eat every 2.5 to 3 hours. I think it's the steroids burning my hard put down calories however, I'm sure I could come up with a way to blame the extinction of the dinosaurs on steroids at this point. I'm not sure the magic behind the night. I cried really hard that night about some stuff, didn't even try to go to bed till 12 am, and took my meds late. Obviously, I'm not sleeping now, I got up at 4 am, to eat, and now I'm up writing to you my friends.
So this Monday at work, it was so funny... I sent an email out that I was reporting to work and some other ones out to some fellow workers... I get an email back that everyone is off today! Ha ha ha ha. I was able to do some paper work and I'm trying to be patience with myself. It takes me 3 times as long to do anything I was doing before and 5 times more energy. I didn't get as much done as I wanted to but I can't beat myself up about it. Hopefully today will be even better. I was also able to make or "fix" some potato soup today by myself. I'm not suppose to do dishes yet but I did cook something.... baby steps right?
Some other wonderful things that happen today is that my Grandparents let me borrow the wonderful lady that helps take care of them and she did some work in the garden and going to do some more this week. My friend Pat went to Lowes for me and picked out some more flowers, and my Poppa and someone else is going to figure out how to hang Evalyn's swing up!! It's so wonderful for people to be willing to help do the things I dearly wish I could do for myself. I was able to do some neighborly visits today which felt nice. A lady, Elise, let me borrow an exercise bike I have been meaning to call but I just stopped by and thanked her. Later I ended giving her a ride back to her cart when she got too tried to finish her walk. She is 90 years old and is still go, go, going. I want to be like that too! My dear neighbor, Fred, broke his arm this week in a fall to go fishing, they have sent so many sweet cards to me and are just the sweetest people ever. I was able to make a card, which I love to do, but now know, that I am indeed not ready to be around glue.
I can't give any details at this point but we have a major issue going with a family member right now that has to be addressed and dealt with and it is so sad, concerning, and we don't need anymore of that right now. Just general prayers at this point and direction from the Lord on choosing words and being calm. My friend Janet is doing a little better over the weekend and they hope to get her off life support soon!
Now... should I work, clean, try to sleep, or eat again??????????
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.
You see who is still up at the Marlow house. It's Charmaine and yes she is back on steroids again. However I have leaarned the earlier I can take them in the day the more sleep I can get. Your doing all the same things I did when I got home, like cleaning out closets and organizing everything. My family thought I had lost my mine. little did they know I was close.
ReplyDeleteOur garden was producing lots of okra at the time and I was freezing okra during the day, and counting it in the freezer at nite. No kidding I could give anyone of my kids a perfect count each morning. They awoke to a text each morning called the State of the Union on My Okra. Before that it was canned tomatoes.
But this passed and fatigue set in. My steriods are just in the morning and just 20mg. Not bad but I am not sleeping good. GVHD chronic is still hanging around.
Your young so hopefully it won't hit you to hard if at all.
Enjoy your family and so glad your home.
charmaine marlow
Thanks... I'm kinda like that anyway, but more in the winter, usually I'm outside in the warm weather doing stuff. But is does feel good to get rid of more stuff I don't need... Jonathan and I clean out our storage every year and that is always good. I'm curious about your GHVD, maybe we can talk by email or something about it. Yea, sleep. I went down at 11 pm totally tired... up by 2 am.
ReplyDeleteHeather,
ReplyDeleteYou are so inspiring! I'm a newly diagnosed CML patient of Dr. Khoury's, and it's reassuring to see how amazing Winship has been for your care. You look awesome! Here's to a continued and inspirational recovery. :)
Dan
Thank you Dan. Please keep me updated on your progress. I love dr. Khoury, you have the best doc here..... he's like house, he doesn't even have to wear a lab coat with his name on it. He is so understand and I can tell him anything, all concerns, side effects, and I make lists to talk to him about. I'm still coming here a lot so maybe we can met up and say hey!!
ReplyDelete