The worst and the best

              I don't even know where to start, or end, or anything in between. So everything between medical, Evalyn, and my random thoughts are in this one. So Good Luck. Not because I don't know what to say but because I'm on more new meds and lets just say I'm not the brightest bulb. I think I could say "I don't know" over and over and be ok with that. Being smarter than the average bear seems to have been some vanity of mine that I learned or inherited from a certain side of my family that I won't mention. Then today I was thinking maybe they weren't smarter, they were just able to reach more potential due the luck of the draw and the happen-stances of life. Sadly, I do not think my IQ is as high as it used to be, but maybe I needed to be a little dumber. I seem to not stress as much.
             This week has been horrible and wonderful at the same time. On one hand, I have had terrible side effects, pain, insomnia, lapses in memory, lack of independence, but have seen the love of God poured over me and my family and brought me up to a new level in my faith in God's promises on healing. Evalyn has also had a great week and is feeling much better. She is learning to "obey" mommy when it come time to get a diaper change and seems quite content that she is doing the right thing. She is saying so many new words and my favorite is that she know what her bible is and will kiss Jesus. She is going to Grandma Kim's and PawPaw's this weekend and also got to see her Grandma Carol and Grandpa Frank today. I miss her already but it is great to know that she knows family and friends and is comfortable at other places besides our house.
              Due to the GVHD, which the doctor said is getting better, we had decided to do a lot of steroids once a week instead of increasing the each day. Boy, I really need to write a book called steroid stories of the  things people do, say, and think of when they are on high does. Needless to say, I didn't sleep well for a few days and didn't go crazy, but lets just say that it's a good thing I have some type of control with online shopping and my husband keeps tabs on me. I also though of two inventions, planned a cousins day out, found 20 verses on healing, sent a bunch of email concerning my brother Scott, and I think I organized my purse. The bad part was for 3 nights I had terrible bone pain. The pain medicine they gave me this last week didn't put a dent in it. I have a high pain tolerance but I also have a high tolerance for meds and alcohol of course. I have woken up in the middle of surgeries. If the meds knocked me out and I got some sleep I could see taking them, but if they just make my head even more foggy plus the other side effects of pain meds, and the pain goes away at the same point, then why take them. They offered a pain medication that is slow acting everyday, but I'm not at that point, nor does anyone ever plan to be, so I said no. The only little releif I can get when it happens is heat but it is very difficult to wrap a heating pad around two legs. I'm trying to find some kind of electric heating pad that's like a boots that goes up over the knees. Maybe another invention. I was finally able to sleep and was ableto drive my self to Emory yesterday although it did wear me out quite a bit, but I was able to sleep well last night..... Sat is the show down day again. Good thing I have a party to go to to celebrate someone's 2 years after a BMT. Last Friday, it took 3 drivers to get me down there and back, they didn't mind and were sweet as ever and it's always nice to spend time with family.
                   I met with Dr.Khoury and the team and he said that the rash is finally getting better, and no I still can't vaccumm because I would at 4 am and wake everyone up. He said he predicts I may can fly by summer. I really want to go to Texas to visit some family. I love Rockport, Tx.... had fat tire beer there for the first time and one of the sweetest men in the world lives there with his family, my Jolly Uncle Fred. Can't keep a good man down, that's for sure. I didn't press anymore of my issues such as getting my turtle back, smelling the roses, and if I'm suppose to be going to the gym. I'm still off the oral chemo but will probably be back on by next week. He just wants to make sure that the rash is indeed all GVHD and not a reaction from the medication. Either way, I still have to get back on it. I did luck out on one thing, my new med has rules around eating too and I was like " If I take this here and this one here, I will only be able to eat here and here" Jesus in Heaven, all respects due, I'm on steriods, I'm freaking hungry. (scenes of Chris Farley dressed as a women on SNL). I also didn't discuss my lack of concentration and that I'm very easily detracted. I can be in min sentence and say " Wow I really like the color of that wall", which I did in my next appointments. My poor husband, I think he doesn't think I listen, I do listen, I just don't remember. I just don't know. I don't know how I get up everyday, I don't know how I made it to yoga this morning, and I don't know what my mom's new work number is and it drives me crazy because I'm a dork and I like to memorize numbers.
                  I ended up seeing an oncology eye doctor.... 40 bucks... gone. Co pays, grrrrr. Well, we already knew that I probably had the GVHD in my eyes too because they were going from dry to watery to fine. I had an eye exam and was able to actually read the 20/20 when I concentrated hard enough... maybe one day I will complete the dream of getting my pilots licences if they find a way to regenerate my brain cells, using my stem cells of course. I got some numbing stuff in my eye and then they put something like a contact lens to some how test the pressure. I could see that people that don't like to get eye drops would have a real issue getting that test. I told her to go ahead and stick a needle in my eye, I didn't care, it's all relative at this point. After seeing the tech, I met a very nice doctor who said I do have GVHD and gave me eye drops, instructions for cleaning my eyes twice a day, and doing warm compresses. Seriously. Between taking all my meds, putting stuff on my molting skin, spraying stuff up my nose, spraying hormones for menopause, putting on compression hose, I'm really surprised that they don't have me putting something in my ears or up my butt. But see, I wouldn't be surprised.... I'm probably laugh. Between Evalyn's meds, Jonathan's, giving my lab shots, and worrying about Wallace's butt, I should be getting paid. Wait, I'm on SSDI, but didn't I pay for that? I got a wonderful card for my Granny's up coming birthday. If you know anything about dogs sometimes they have anal gland issues. The card says " I know you don't like getting older, but at least you don't have to get your anal glands expressed." So today, I have to find it in my routine to pamper my eyes, that was she said, ha ha I have a 19th month old and cancer, how gives a rat's ass about my eyes. Speaking of rats....
                     I met a guy named Guy today at lunch. All the table's were full and I really wanted to eat there and he looked like he was about finished. I asked if I could sit with him. He is in a small cancer research department at Emory that tests on mice. We had a great discussion about our wonderful spouses, children, and pets, along with our jobs and cancer research. I hope I can go one day to the lab, that would be so cool. You know, I was a science teacher... still love it. I'm a lab rat too, so we talked about the mice and that he doesn't get attached anymore. Yea, I'm tougher too, now, I said. I gave him my card and hope to run into him again sometime. It's great to meet nice positive people.
                    I was also blessed this week to speak to a lady named Lynn that has had a very similar case as mine. She is not on the same oral med and doesn't have the GVHD but so far she has the most similar case around here. She had to have total body radiation, BMT, and she relapsed after one year. It was so great to talk to someone about it and be encouraged by her overcoming this and she continue to go through the process of healing.
                  Mostly, by a person anyway, I was blessed by a good conversation with my grandmother. We are very similar even though we are more than 50 years apart. We are both very independent and have had to give a lot of that up. She also loves to garden and we are both hurting about that. Pill boxes, blahhhh. Not driving ourselves somewhere.... dreadful. But we were able to laugh, hold hands, and realize that we are blessed. We both agree that our husbands are just too good for this world. Our dogs bring us so much joy and well, Evalyn, you'd just have to meet her.
                As a lot of you know, we were looking for a "sunday" church before I relapsed and stopped. We go to a small group during the week that has worked for us because we have actually built relationship and it just feels like the what the church is suppose to be like. Now that Evalyn is getting older, we want he to grow up in church. We are very very picky people. Jonathan being a theology major and me well, just been burned too many times by corruption in organized religions, seems to give us free range to just get up and leave if it's not working for us. We have not done that yet, but it could happen. We went to a new church this past Sunday. I had a peace there, I didn't like some things, but I never will, because I don't like church, whatever it was, I know I was suppose to be there. The message was about praying bold prayers, about believing not only in the promises God has given us in the Bible but also the ones he has personally given to us. God had already been working on me the week before about praying more of the scriptures, then we went Sunday, then at small group last night, we discuss Abraham and God's promise to use him to make a nation. The point is that he believed. Now, I know a lot of people pray and believe and hope for many things and they do not happen. But I know that God has told me that I will get through this. I will live. I will be living whether I'm physically on this earth or healed in Heaven.
                 God's already laid the path, my part is to believe, to hope, and to pray.

         Praise the Lord, O my soul, and forget not all His benefits. He forgives all my sins and heals all my diseases; He redeems my life from the pit and crowns me with love and compassion. Psalm 103:2-4