Jan 8th Balloons,volcanoes and designer nails- 4th admission

              I’m here at my studio apartment, as my aunt Lisa likes to call it. I don’t really have the best room this time and was too tired yesterday to think about switching today, so I didn’t bother. I’m don’t have a fancy view this time, but I’m pretty close to the helicopter landing pad, so maybe I’ll catch a good glimpse. I’m debating on if I should try to talk someone into letting me go see the landing pad since it is right there. I’m so close that I can see dust blowing outside the window. Maybe I can use the news story to my advantage…. Maybe I could take a ride! Yea, right. Ha ha. I’m on the eighth floor this time, which is the bone marrow transplant floor. It’s good to see the balloons on the door which means that they just had the transplant. It’s nice to meet some of the staff up here and learn more about BMT’s.  I’m getting plenty of sunlight in this room. I think I might get a tan on the right side of my face, with the shade down. I’m pretty sure that sunscreen is not given in the welcome package. I decorated first thing with cards, pictures, and of course my little lamp. The I pod actually came out first and we listened to the Paper Route mix as we unpacked a little. Jonathan actually had to leave pretty soon after getting to the room because the day was long and traffic was going to start soon. I said my tearful goodbyes. I felt like crying all day, so it was good to just do it, you know? On a good note, I did get to use my fancy vintage luggage that I got for Christmas!

It's so beautiful, I can't put it in the closet. 

         So just a little bit about our day when I come back to Emory. Don’t think that I am not thankful for the amazing medical care that I am receiving but the truth is these days are so long that to ask anyone but close family to go through it with me is just wrong.  Jonathan will be at school on Fridays soon so that means we have to get a sitter and I have to get a ride. The ride can’t just drop me off because there is no where to put my stuff while I have all the appointments. So, we start with labs, and then have an appointment with Dr. Khoury, and then I have to wait for a bed to be admitted. This process takes about 5-6 hours and that doesn’t include the drive and then the admission process I have to do once I get to the room. I may get to start treatment by 10pm if the pharmacy has the chemo yet. The worst part of the whole thing is sitting there with a blue mask on, breathing my own air, and thinking about how much longer is it going to be.  It seems like I would be able to entertain myself, sometimes I can, and sometimes there is someone in the waiting room talking so loud, you can’t help but listen and wonder if an email should be sent out about waiting room etiquette.  I guess we need a splitter for headphones so we can just watch a movie when we get to that point.

My white stripes....

            I have a few new side effects from all this. This week, I noticed that my nails have these white stripes on them. So far I have two lines. I’m not sure which chemo is causing it or which cycle; I have an A and a B. I guess the lines will just keep going up the nail. It might end up looking pretty cool. I just hope they don’t get brittle. I have to pick my guitar with my nails. Ok, so this is super gross, and no I didn’t take a picture, but maybe I should have to go into the world record book. I’m here to record these things right now, there is no point of leaving this one out. When my white blood count starts to go back up, any place that is healing or needs to be healed can have an overflow of white blood cells and it can turn into a pus party. So, I ended up with a mountain of pus on top of my shoulder. I had always had a little bump there but never really knew what it was and it didn’t really do anything. So basically, this thing was too big to be called a zit. It was so gross. Anyone that saw it yesterday, docs, nurses, and Jonathan, wanted to get a hold of it. They were going to have to “lance” it today, but it took care of itself for the most part, unless my mom and my nurse decided that it was not done. I say this was too big to be a zit because I bet you never had to take pain medication for a zit. God, I hope nothing like this happens again. It’s so embarrassing. Some people have come in here because I was featured on the news story; some people have gotten off 85 to see the world biggest human volcano. I’m going start charging.

           I managed to walk a mile around the hall today, 21 laps, so boring, but I told myself I couldn't write this blog until I did it. I guess I still believe myself. I’m on cycle 2 B of the Hyper C-VAD A new hospital protocol has everyone getting a blood thinner shot in their stomach each day. Not really fun, it kind of hurts and now I have two dots on my stomach to go with my other skin issues. This round I will be getting two more Lumbar punctures, where they put the chemo in my spine to prevent it from spreading there and to my brain. A different person is doing it this time, which I’m nervous about but hopefully it will work out ok. Please pray that I don’t get a headache with these LP’s, they are so bad.  

My pretty pics are up!

             So I saved the good news for last. Dr. Khoury said that they have two possible leads for donors for me! They have to go through some more steps and are waiting. That is such wonderful news. Please continue to pray that one or both of them is a match for me. A please, donate if you have not already. There are so many people waiting for donors!  

Be The Match!