Medical update 2/17 " The Rides and Cry"

  Hello,
          I hope ya'll are enjoying the weather today, we got to go on a golf cart ride, it was nice. Last 24 hours has been a roller coaster. My plan of driving myself to my cousins house last night, driving myself to Emory, going to visit brother Scott, etc... didn't pan out.  I had bad dream wed night that I was driving and in a wreck, then yesterday I just didn't feel very well, I was so tired. So, here is what it took me to get to and from Emory, I'm lucky to have people that love me. My Dad down the road drove me to my Uncle John and Aunt Lisa's last night. It was great to see John and him talking, they were best friends in high school. Gosh my cuz Andy can cook! We had some kinda of Breaded Cod over spinach and potatoes... maybe Andy will post the recipe?? I was able to take a bath there and actually get most of my body in there for my therapy bath salts. I hate taking baths. I don't know what to do, I can't just sit still. I'm not a hot tub person either. Luckily, I have an I pod. Couldn't go to sleep last night due to being nervous about my appointment, and the Golden Girls were on and I don't have cable at home. So I slept maybe 2 hours in a very comfy recliner. Didn't get my skin cells all over my aunt bed, so that was good.

My whole body is like this....

            This rash/peeling is very painful in places. Imagine the worst sunburn you have ever had. That what the back of legs feel like. I'm even walking funny. Thank God it doesn't itch, itching drives me to drink, a lot. Weird I know. My recipe for poison ivy is a bottle of wine and bleach... it's the only way I can get rid of it. I had a feeling when I got up this morning and moved that I may not be getting the best news at Emory today.
Andy drove me to my appt. Thanks for getting up so early for me man! Forgot to get a pic of us! Boy am I slow today... Dr. Khoury said that the rash is worse.... here... I thought I was healing, but there is a rash coming up under the peeling. Great. Of course we don't know if it is the GVHD or the oral chemo or both... or nothing. Then he said it.... Double the amount of steroids..... I almost choked.... that would put me back at 120 a day! That was when I was super crazy... buying, planning, never sleeping, saving the planet, start 20 projects Heather. I started crying. Pretty sure this the first time Dr. Khoury has ever seen me cry. Not sure if Andy has seen me cry. I hate crying, it makes my nose stuffy. I mumbled something about it... don't remember. Then he said ok, well lets infuse you once a week with a steroid so it won't be everyday, I thought that was sweet of him. Then he remembered that they took my picc line out and he didn't want them to do an IV in this skin. So now, I'm going to take a huge dose of pill steroids once a week. Watch out!  BP is high do to the immune suppressant so I have to increase that med, then he put me on another immune suppressant that has to come from somewhere not normal. I have to start a Z pack due to this sinus stuff that won't go away and I can't have my teeth cleaned on Monday. Not that I like going to the dentist. The only good thing with meds is that I'm off the oral chemo for 5 days and don't have to follow the no eating for 4 hours rule. Found out for sure that I'm a very small number of people that's on this med after a BMT relapse. I asked, well, is there anyway to find someone to talk to that is going through this? They are going to hook me up with a lady, she isn't on the same oral chemo, but that's ok.  They really want to keep a close eye on me. Even asked me to email pictures. I didn't even get to talk about how painful this was, if I could have my turtle back, and when he thought I could travel because I want to go see my aunt and uncle in Texas. Well, I'll see Dr. Khoury again on Wed. I ran into Dan, he so nice and encouraging!! We just happen to be there the same day same time, I think he is every 3 months or so. Awesome!
              Then the most wondering bagel became a part of my life Nove lox from Einstein. It has a bagel that has cream cheese, tomato, capers, and smoked salmon. Oh my gosh it was good, I'm so glad that I will try new and strange things. Hey you! Don't knock it till you tried it, as my Granny would say. Andy took me to my other cousins house, Amanda cause he had to go to work and Amanda could take me back to Athens. I was able to see her house, it's so pretty and big. Amanda is a sweetheart, always has been, she is a nurse at Children's Hospital. We went to a few stores in downtown Athens, found my fourth of July outfit, very important. We also went and ate sushi, three fish in less than 24 hours... my brain is oiled. Man with those extra steroids tomorrow, I could come up with something amazing. It was great hanging out with her. She loved our little boat house and how it is decorated and took a golf cart ride with us. Somehow she bought lunch, not sure how that was fair, I was too tired to fight her on it.
                  Evalyn was still awake when I got home and seemed to have a good day with her aunt Anna, Poppa Bruce, and Fay. It was great to see her smile, I missed my rose. Now I'm cooking the stuffed shells my aunt Judy brought yesterday and plan on eating a huge piece of the cake she got too.... I think she loves me. I'm also watch the sun set over the lake as two herons flirt with each other over 4 or 5 docks waiting for my wonderful husband to come home. Drinking a glass bottled coke. Not too bad, not too bad of day.

rare pic of my chubby cheeks

Sweet Amanda

                                                                     I'm pretty lucky really.