I have been to Emory 6 out 13 days, most scheduled. Sunday I had to go because my picc line was not working right and we had to go all the way down just because they don't want anyone else messing with me at this point. Luckily, the problem was easily fixed.
Today I signed another consent for a second study drug that may help with the GVHD after the transplant. Since I already have been feeling like a lab rat, they decided to take me down to the basement where I was put on a pedestal, had lasers grid out my bodies, and aliens says things that I didn't understand while they wrote down measurements. What kind of hick would I be if I didn't have a good abduction story.
I was being measured for whole body radiation that will start next Wed, the 23rd, at 6 am in the morning. We went down to radiation oncology which is in the basement and then we go further down, then they took me into a room that was even lower, that had a door about 1.5 feet thick. The aliens put me on a stretcher and jacked me up so that I was high enough for the huge machine to align the lasers on my body. It was freezing in there and they made me take off my hat. There were four of them in the room at the time and they laid me on my side and kept moving my knees, hips, feet, head, back to be aligned perfectly and then told me not to me. They proceeded to take some type of foreign measuring instrument and measure every part of my body and calling out things like "-3" and "+20", then they would go out of the room an the enormous machine took some X-rays. It seemed that 2 of the 4 were students. Then they had me flip over to do the same thing over again but this time I could only see their shadows on the walls and I was afraid they may start of the lasers to brand me. After that, a physicist came into the room and had them redo some of the measurements and started saying things like "The SSD needs to be zero at the point of the central axis... yada yada" I think that's what they said. It was very difficult to stay still but I thought it was best to do as they said with little complaints since no one would be able to hear me down there and there was no cell phone service. Looks like I'm going to need that Zofan medication they are going to make me take before hand. It makes me a Zombie. I'm sure there is a movie about Zombies and Aliens getting along just fine. It's going to be a lonely hour while my body is being irradiated. I hope they are the same aliens so that I can learn their names.
Here is the schedule: 3/22- getting new PICC line put in, 3/23-6am radiation for an hour, again at 1pm, being admitted somewhere in there, next two days radiation twice a day for an hour, next two days chemo, then the transplant on 3-29.
Odd thing, today I noticed some of my hair growing back. It is white. If I have white hair, I'm going back to the blue.
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.
Tuesday, March 15, 2011
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Wow, that sounds...like an alien abduction! Can you listen to music or do anything else while getting radiation?
ReplyDeleteI have heard/read of straight hair growing back curly after chemo, and hair growing back a totally different color than it used to be. But if it's going to be white, it'll be easy to dye any color that you want! You could do purple next time. =)
Purple would be fine with me. Yep, they said that I can listen to music. Of course, they may have just told me that to get me on that ship again...
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