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.

Wednesday, March 30, 2011

Day Ground Zero, on To The Basement

The bag of stem cells.

Who knew you could smile through a transplant?
             Hello! Praise the Lord, the stem cells got here safely and I didn't have any reactions to receiving them. It wasn't really a big whoop, just like getting blood. My vitals had to be monitored over an hour and I had a nurse in the room watching me. My mom came up this morning and stayed with me and then Jonathan came for a while. I also The stem cells where not even frozen, so I got them fresh from overseas! God Bless my donor, I hope to meet her one day! We also had a good visit with his brother and our sister in law. I've decided that everyone gets a picture with a mask on since I'm stuck in here. Well, it makes since to me. I will have some pics up tomorrow of the masks visitors.
                   Remember when 911 happened and they called it ground zero but there was still a big whole in the ground from the rest of the building? Well that is still where I have to go and still have a long way to recovery, but this is one of the biggest steps! The picture is hard to read, but if you start at the left, I'm at the third line, which it BMT at day 0. Now my counts are dropping and will go into the "basement period". They say usually around day +10, the stem cells start to grow new bone marrow which makes new blood cells. Since it was an unrelated donor it may take a little longer. It looks like I'll be getting out of here within 2-3 weeks. Funny how fast time can go and how slow it can go at the same time. I wonder how many of you are thinking about all the things you didn't get done today because you didn't have enough time. I know, I have been there, no judgement, just a thought. I have my own issues to deal with. A fellow transplant patient had to go back in the hospital with pneumonia. Get well soon Janet!
               I don't know how this works, but somehow the chemo and radiation I received are still killing my immune system off, but it doesn't kill the stem cells. I will be on IV anti rejection medications each day, anti-everything pills, fluids, and will get platelets and blood as needed. I will also get some more chemo but I don't think it is as strong. Not sure at this point when they are doing that.  My peach fuss and the eyelashes that started to grow back will fall out again. No big deal. Mostly, I'm really don't want to get mouth sores, because they can be so painful and make it even harder to eat. I want to keep my weight up and not get too weak before going home. I have lost 7.5 lbs since being here, a lot in fluids I'm sure. I'm eating a little better now but I can't eat much at one time. I feel that my brain is a little clearer since the strong chemo is getting out of my system. As you know, since I tested positive for the cold virus, I have not been able to go the kitchen or out in the hall. I have been able to go off floor to walk, which is good for me. Well, since I have not been retested yet but my counts are so low, I can't even leave the floor now. So I'm saying "I can not leave the room!!!!" Holy crap, that really freaked me out. After the team left, I cried some because it is just all so horrible sometimes. You've been in a hospital room, I'm sure, it's small. I also got my hopes up a little about maybe being able to visit with Evalyn this weekend but they said I probably won't see her until I go home.  Now, I can get retested but the doc said that I will probably still test positive because even when you don't have a virus anymore, your body still sheds it. So I'm stuck, now what do I do? Poor poor hamsters in there little cages. At least they have a wheel.
              I know that when Paul was in prison, he had to come close to going crazy. It's not like he had the internet or a working toilet. I know that I will get through this, I just hope I'm still sane. Hopefully, now that my brain is clearer, I can do some more reading, playing my guitar, and of course paper work. I have the most wonderful employer who wants to see me through this... they are amazing. I mentioned a book the first week I was in here, A Bend in the Road, today I read something that inspired me. He said, " What a terrible danger it is for us to become trapped in the claustrophobia of the presences of our crisis." He goes on the talk about how God uses everything to mold and make us. We can't see the future, but we can see the past and what God has done. He said to make a list and to make sure to remind yourself of these things. That doesn't mean that there isn't going to be a lot of tears, anxiety, fear, etc, but it's what we do with it. It's taking it to the Lord and trusting him to see me through. And to see you though it.
My sweet husband and me watching, or trying to watch, a movie.
                 Something I have been pondering on the last few days is how we as humans never seem to be satisfied with any stage of our life. When I get to drive, when I get a job, when I get married, when I get pregnant, when I get that promotion, when I am better, when, when, when. Just listen to everyone, listen to yourself if you are doing it. I'm guilty of it everyday. For example, Jonathan is in school and is trying to find a job, in accounting if anyone reading this is hiring...., and that has been the goal for a while. Well, when he has a job, he isn't going to be home as much and who is to say I will like that any more than where we are now. Why can't we just be content where we are and trust the Lord. I think that is why we go through some of the trails that we have to face. If we don't, we might never be grateful for anything.
   Psalm 40:1-3  
1. I waited patiently for the LORD; 
   he turned to me and heard my cry. 
2 He lifted me out of the slimy pit, 
   out of the mud and mire; 
he set my feet on a rock 
   and gave me a firm place to stand. 
3 He put a new song in my mouth, 
   a hymn of praise to our God. 
Many will see and fear the LORD 
   and put their trust in him.                

Tuesday, March 29, 2011

Day -1, AGAIN

Hello, Yep, stem cells will not be here till later tonight so the transplant will be tomorrow. I think my mom will be glad that she can be here. My day got a little better yesterday and I was able to take a walk off floor for a while. I skyped yesterday with Jonathan, Evalyn, and the puppies. It was bitter sweet of course. It was nice to see her smile and squeal a little when she heard my voice but didn't seem to get into it too much. Poor Wallace and Chloe kept going to the door looking out when they heard my voice. Both dogs slept with my mother in law last night, they miss their mommy. I was also able to do a little paper work yesterday, not near enough to keep up though. Today Jonathan said that Evalyn coughed on and off last night so please pray that she stays healthy. I got a little bit of sleep last night, but you know you can't really sleep in a hospital. I woke up around 3:30 am feeling very nausea and had some anxiety about the transplant. I took something but still feel really sick. I decided that maybe I needed something on my stomach and I was right. I managed to get down a few gold fish and some apple juice and I felt a little better. It has been difficult to eat very much to say the least, even the food I normally like to eat. I have already lost some weight but they say that is normal. I'm really to be over this cold for good so that I can at least go to the kitchen and out in the hall. Everyone that comes in has to wear a mask so it is nice to walk in the hall and see people smiling. So here's to tomorrow!

Monday, March 28, 2011

Day -3,-2,-1

My posts are getting shorter and shorter with the amount of energy I have. I remember some things from the last few days. I remember being sick to my stomach a lot, being too weak to do anything but lay here, listening to worship music hoping not to go insane, going to the bathroom every half hour due to fluids (even at night), being picked and probed a lot, taking chemo 10x stronger than I have yet, having trouble getting food down, terrible storms next to huge windows, worried about not being able to work,  and not being able to concentrate very well. I also remember my wonderful husband bringing me food that I might can hold down or even swallow in the first place, Evalyn playing with my hospital bracelet and smiling at me (I think she thought I was going with them), and my parents coming up to my room for a little while. I have successfully cried in front of most staff and the truth is that I don't feel good and I'm scared. Again, I know that God has a plan and I'm thankful for that, but this is some hard stuff. Since I tested positive for a cold, I can't even go to the kitchen and get my own food or get some exercise in the halls.
If the stem cells get here early enough tomorrow then the transplant will be tomorrow; if not, they may push it to Wednesday. Today I will try to get some rest and again try not to go insane. Even if I do, God is still good.

Saturday, March 26, 2011

Day -4 and -3: Done with the Oven, Now for the icing

You can't see how swollen my neck was due to the huge ice pack!

I had to lay in this position forever! 

The huge radiation machine that zapped me. 
               Thank goodness I was able to get some sleep on Thursday night! I was so out, I didn't even wake up when they came to draw labs at 12 am. I never sleep that well. Usually I will wake up if someone touches, or even thinks about touching, the door knob. On Friday, I finished the last two rounds of radiation. I'm telling you, laying in the same position for that long is enough to drive you crazy. Silly me thought they would have an IPOD hook up but they did not, so I made a bunch of mixed CD's to take. I ended up leaving them there for those that come behind me. That last round was pretty emotional for me. It really stinks to have to do this much harm to my body in order to get better. I was trying not to cry because they don't want anything on your skin since it can make the side effects worse. I have to admit, I shed a few tears when they were almost finished, knowing there was a 99.9% chance that my ovaries were not going to be functional anymore. Not that Evalyn's not enough for us, but I never imagined I'd have just one child. Yea, I know, I know, God has a plan, there's always adoption, I'm young and you never know, yada yada. That doesn't help me feel better at this point. Not to mention all the other risks that come along with that much radiation. I swear they are trying to turn me into a paranoid schizophrenic.
               My glands in my neck are not swollen anymore and my bone and muscle pain I was having is gone. Very glad about that! My EKG came back fine, but they are still concerned about my high pulse rate. I feel that it has always ran a little high. They are going to keep an ear on it. Hee Hee. I still have a sinus infection, not a good thing to have when your immune system is being shut down. I'm pretty much on every anti medication possible right now and my tummy is not happy about it. Another side effect of the radiation, is that my salivary glands are not functioning correctly. When I take a bit of something, it's like I put 5 crackers in my mouth, except it tastes worse than crackers. So... eating is not going so well. They said that I need to try things that goes down easy, wet and mushy basically. Wow, that makes me hungry. I'm also on a diet restriction. I don't understand all of it yet but I know can't have any raw veggies or fruit. I was out of it when I read it the first time.  My BMT doctor is Dr. Flowers. I like him a lot, he looks like Tiger Woods, but that's not why I like him. He let me know that next week is going to be pretty bad and that there may be a short time where I'm not eating anything. Well, I guess it's a good thing  I never lost that last 10 lbs of baby weight! It is very hard for me to concentrate and to do much. Even writing this blog is taking forever. As I start to feel worse they may get shorter or Jonathan may have to take over for a few days.
                On Friday night, my sister and brother came to visit. We took a nice walk on campus and got some food at the food court. We were entertained by a group of what looked like high schoolers, sparring with foam weapons and shields. Jennifer and I agreed that if your going to do something like that, you should just go all the way and dress the part. It was such a beautiful day and I saw some gorgeous tulips. I took some pictures of them but I wasn't in the mood to stand next to two very very good looking people with my mask on for a picture.
Jennifer and Daniel, I love them so much!

I don't think my tulips at home are this pretty!

               I have been feeling pretty depressed the last little while,  knowing how long I'm going to be here and that it is going to get much much worse before it gets better. I even turned on the T.V. last night. I watched some good GA shows on PBS. I did get to move to a better room so that was nice, but then Jennifer helped me unpack everything so then seemed more official that I am staying for a long time. I miss Evalyn so much. It's hard for me to talk, write, or even think about her without crying. I know that she is being well taken care of, by my my mom at this moment. She is great with her and Evalyn loves her Grandma Kim. I just have to try to keep my mind of things and remember that if this had to happen, this is the best time. It would be awful if she could call me and she was crying also. It's true when people say that it is easy to praise God during the good times and then not to during the difficult times. I had to make myself listen to some praise and worship music this morning and had to make myself pray. I know that this is a time that I can really seek the Lord and he can bring our relationship to a new level. I just have to do it even when I don't feel like it.
            I had a lot of medication I had to take today. It was insane. It's all making me feel out of it, sleepy, but ready to go at the same time. I'm going to probably sleep on and off the rest of the day. Tomorrow, I get to see my hubby, Evalyn, and my Mom!

On Thursday, when Evalyn and mom came to visit. 

I got a kiss!

Thursday, March 24, 2011

Day -5: Stick a Pen in me, I'm suffocating.

                      I'm pretty much drifting in and out of consciousness while I'm writing this  because I'm so tired.                          
If  I leave out an important part of the story that you can tell, feel free to ask me. See just right then, I started zoning out.  They had to really increase my pain medication last night due to the muscle and bone pain, along with my neck swelling up. I looked like a swimmer, being bald and having a huge neck. I think that's what strong swimmers look like. I have a pretty high pain tolerance and a high tolerance to medications. We tried stronger pills but the pain was so bad that I was still crying and shaking, so we started some IV pain meds. These helped the pain immediately, but also made me feel like a zombie, and the Zofran was already doing that. Now, this what happens, you have a side effect, that has a side effect, etc
Cancer=Radiation= bone/muscle pain/ swollen glands= pain medication= lack of concentration/
 itching skin= anti itch medication = freak out and think your going to die.
                  It was 2 am in the morning and I had not slept at all do the the pain and itching. They gave me some benadryl, nothing new to me and that's when it happened. She was giving me the benadryl when all of a sudden I sat straight up, my throat felt like it was closing in on me, and I COULD NOT BREATH. I'm not kidding. The look on the nurses face was she was just as  freaked out. She was asking what was wrong but I couldn't answer. I made the "choking sign" because I didn't know what else to do. Finally, I managed to push out "Get Help." At that point, I was able start taking very small painful breaths that sounded like some sort of animal . I was really thinking that someone was going to have to cut my neck so that I could breath. Then, slowly, I started breathing better and better. That was of course not before the adrenaline kicked in since I thought I may die. Um, I think I decided suffocation or drowning is not the way I want to go . I've had 2 more rounds of radiation today, a Cat Scan, a ton of medication and have barely been able to stop going and waiting, going and waiting. We got the results of one of the test and it looks like I do have the common cold. I'm getting some bags of "stuff", one of the me is IV Immune Globulin.
                     The highlight of the day was that my Mom brought Evalyn by for about and hour. She was so happy to see me and looked cute in the pink and white apple outfit that Grandma Kim bought her. She is already wearing some 12 month ! We put out a big blanket on the hospital lobby floor and played for a little while. Sounds gross, but it's a beautiful lobby, like a house, and the blanket will be washed asap.  She knew it was her mommy behind the mask and just smiled at me. Puppy Dog is her first "sign." that she has learned, but I think the first spoken word will be DA DA. He deserves it :).
                      Uhhhhhhhhhhh... they just came in here saying I need an EKG cause my heart rate is too high. Sometimes I cuss in my head and don't it out loud, I need to work on that.

Wednesday, March 23, 2011

Day -6 Killing me softly with radiation

Until I leave the hospital, we will number the days. It is -6 today because the day of the BMT is day 0. Then my new life begins, hopefully. I had radiation at 6 am this morning. It's a long process. They turn me on one side, line me up with the laser grides, take an X ray of my lungs for the placement of the lung blocks, and then start the radiation. Then they turn me over and do that all over again. We were lucky to get a room on 8E pretty quickly this morning and I'm already on the list to get a better room, hopefully tomorrow. I'm not unpacking yet. Jonathan had to leave this afternoon but not before we had one of the best burgers I have had in while. It was not from the hospital. I had radiation again at 1pm. As I waiting for my turn with the machine, I met a nice man who's wife was in there getting radiation on her abdomen. He said that she was having to stay here in the Hope Lodge by herself after tonight and was very nervous about it. I gave her my number and told her I was staying alone too :) I like it that way, really. I don't like to be around people when I'm sick or in pain. Speaking of pain... I'm having some horrible pain caused by parotiditis. It's like the mumps, so my jaws and neck are swelling and hurt pretty bad. So far the little pain pills are not working. I might have to go for something else. I would say I have not been in this much pain since the last week in Oct, first week in Nov. when the "shit hit the fan". I'm also having some bone and muscle pain in my hands and arms which makes it difficult to type or do anything else I want to do. But, I'm doing it anyway, because if I don't, I will still hurt and might lose it. Not sure what "it" is at the moment. I'm holding on the the next verse cause it's only the first day, wait, it's -6.

1 Peter 5:10


 10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Leaving Home and No Job for You

            As you can imagine, Monday and Tuesday were terribly difficult know I had to leave on Wed and there was a chance I wasn't coming back. I'm not usually a weepy one and can usually hold it together for the most part. Well, not those days. Doing anything with Evalyn just made me start missing her already. I wonder what she thought when she saw her mommy crying. She was probably like, " That's not how you do it mommy, here it goes...." It seems like she knew something this week. At times, she would hold my face in her hands, turn my face to her, and look so intently deeply at me with her big blue eyes like she was saying, " I know something is going on Mommy, not sure what it is, but I love you, now come here and give me a kiss." Then she would give me the sweetest kiss, not the silly open mouth baby kiss, but a real gentle kiss right on the lips, being careful not to scratch me or pull my hair. Ha, if you missed that one, you better stop now.
              I cried in front of most people in came in contact with and didn't answer my phone because I don't like talking on the phone much and well, talking on the phone while crying seems worse. Crying in front of my grandparents was terrible because I know they will worry about me more than anyone. Not because they care about me more than anyone, but they are not as rushed and busy as most people. I don't want them be too worried because then they will try to come visit me, I know you are reading this Poppa, and they don't need to come to the hospital. Too germy.
            We did manage to go to small group on Monday night for Jill's birthday dinner, which was yummy, she turned 30, again. Evalyn was so good and happy for everyone. It was nice, but we had to get out of there before I cried in front of all them, not that they would have minded, but geez, it was a birthday party.
           Tuesday had enough trouble of it's own. I was so exhausted from crying and not sleeping due to my allergies or whatever it was/is... that leaving wasn't that hard. Luckily Evalyn was asleep so I didn't have to leave her while she was awake. I started to choke up when I kissed the dogs goodbye but held it together. Beleive it or not, this will be just as hard on Wallace as anyone. He is enamored with me and got sick last time I was away for a long time. Chloe was just like, " See ya Mom, I'll make sure everyone does what they are suppose to and report it back to you. I will do most of my inspections in the kitchen and give out as many licks as I can."
                 Emory is a wonderful hospital and I'm so lucky to be treated there, but dang, communication is something horrible. When your already on edge about your health the last thing you need is for the people that are making crucial decisions, to not know something, or give the wrong information. Yesterday, I couldn't eat because I was getting my PICC line changed to a larger one and they kinda sedated me for that. So I was hungry, which is no way for me to face the day, as most of you know. There was some confusion about what lab I was suppose to be in and how much blood they were going to take. I ended up giving a lot more blood than expected on an empty stomach. We then met expectingly with Dr. Khoury due to me having the stuffy nose and such. He gave me a steroid pill that would clear up any allergies and if it did not, then it was something else and we would need to postpone the BMT by two weeks, if the donor would still do it. Good Greif. Then we headed to radiology, late of course due to the confusion and Dr. visit, where they didn't seem to know what was coming in or coming out of me. Once they figured that out, we got started, and now I have some new holes in my chest. I didn't get to see the guy that promised me a BLT when I got out of the procedure in Nov. He didn't do what he said. I let him know that day that he missed getting set up with my beautiful sister. Ha! In recovery, Jonathan broke the news to me that he didn't get the "This sounds like perfect job for our family, they basically acted like he had it" job. I tell ya, that was it, I was pissed. I'm still pissed, can't we just have a little mercy here???? I'm ill that they went out there way to tell him that an older student with life experience was so nice to talk to, that he scored the highest on their little test, and said they would get back to him a week ago. Which of course they did not.  I think I was more upset than Jonathan, at least outwardly. It stressed me out so much, I think that's why my new wounds started seeping.
                Jonathan and I went to the hotel, which was very nice. The pool area was beautiful! I loved the tropical plants and retractable roof.  We met a very nice bartender that had a wife who survived breast cancer while I was having a dirty martini. Yep, missing meds and alcohol. Sometimes.... you just have to break rules, except you future Evalyn who may read this one day. We were both in a terrible mood, not at each other, but at the world. You know you have the love of your life, when you are still glad to be together despite all the terrible things going on. We went out to eat at Mary Mac's tea room, like normal people on a normal night, except we had a looming cloud over us that: A. I'm about to be away for a long time, and not on my dream trip or B. I will have to go back home for two weeks and dread doing A. I might as well have carried a flag that said "I'm sick" because my bandage from the procedure was enormous. We went back to the hotel, watched some trash on the big tele and went to bed.
              It is only strength from God that is keeping me from losing my mind. I'm not kidding.
          

Sunday, March 20, 2011

Your will not mine

                   

           Do you know that feeling of dread in the pit of your stomach? It can come about for many different reasons. I use to get it Sunday night before I would have to go to a job I didn’t like. Similar feelings can occur before a big test, having to “break up” with someone, or other uncomfortable situations. Well, hopefully being in some of those situations throughout the years has help to prepare me for what I fear is going to be the hardest thing I have ever had to go through. The amount of dread that I feel is so heavy I feel it like I have felt no other emotion. I can’t even imagine how much I’m going to miss my family but even worse what type of pain and weakness I’m going to experience. I will be pushed to the very brink of death and pulled back again. The thought that I really could have come this far and still not make it, scares me, but also makes me angry. I’m hoping for the best of course, but the truth is good people die every day. It doesn’t matter if you’re a mother, a good person, or whatever makes you feel invincible to death and disease. I do and always will know that God has a plan and whether I like it or not, it’s not my plan, and I’m not God.  Many of you agree, God is good, no matter what happens, right? Could part of God’s plan really be me dying early? I think if that happens than it was God’s plan. Do I think me dying could straighten out a few people that God loves very dearly? You bet’cha.  And do I think God could would do something like that to win someone heart and save them from hell? Yep.  Well, let’s just hope it doesn’t come to thatJ.  You people straighten up out there so I don’t have to die. Ha ha. Sorry my humor is getting darker by the minute.
                 I’m reading a book that my friend Mirka is letting me read called, Bend in the Road, by David Jeremiah. The author had cancer and actually has to go through a BMT. I haven’t gotten to that part yet. He quotes someone in the book and it says “ There is nothing, no circumstance, no trouble, no testing that can ever touch me until, first of all, it has come past God and past Christ, right through to me. If it has come that far, it has come with great purpose.”  That really spoke to me. Not that I didn’t already believe it, it’s just the way that it is worded I guess. I listen to my grandparents and my neighbors talk about the trials they have been through and it always amazed me that they made it through all that. Well, I suppose that this will be the story I tell to my grandchildren and if not, then maybe you will tell my story for me.
              As these last few days at home are quickly slipping away, I have had plenty of time, while I’m not sleeping, to pray, beg, and generally stare at the wall. It’s terrible of me to wish for these precious days to be over so that I can get this over with. That’s part of the dread though. Not that I have not enjoyed moments during the day, all of them with other people, Evalyn, Jonathan, neighbors, family, and my puppy dogs. I caught five fish with Jim this week and Jonathan and I laughed so hard today with Evalyn that I cried. We have been treated to dinner by loving friends and family and my sweet girl Corynne was able to spend the night.  I have not felt the best these last few days and must have a cold or my allergies are just kicking my butt. This had added to the insomnia, thus increase my praying time.
             This brings me to this Easter season, where I joke about what we have given up for lent this year. Don’t get me started. I started thinking last night about how Jesus must have felt the days and nights leading up to his death. The only glimpse is when Jesus goes to the garden and says,” O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt.” The Bible says that he prayed this over and over. This really shows that Jesus was truly human and it is also not wrong to ask the Lord to take away painful situations. That being said, we also have to accept that God’s way is better than ours. If Jesus chose to go through all that suffering for us, it seems that what I have to do might not be so hard. Not that I have the choice to go through it or not. As my good friend and neighbor says, she can’t tell people why terrible things happen, but she can tell them how to go through it. How? I’m still figuring that part out because the worst is yet to come. I know I have to seek the Lord and have faith, but also be free to have some really bad days and not be as strong as I would like to be. When we are weak than he is strong, correct? This will be that lesson for me and maybe some of you. 

Wednesday, March 16, 2011

Happy 8 months Evalyn!




Evalyn is such a joy and we are so blessed to have her! Mommy is going to miss her so much!

Tuesday, March 15, 2011

I was abducted by aliens...with lasers... and now my hair is white.

           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.

Friday, March 11, 2011

On to the transplant

Me and my Dad
Hey, you want to go to a party?
                    We had a great and very sad week. We went my cousins, little girl's 1st birthday party, and had a great time seeing family. So for the record, she would be my 1st cousin once removed and Evalyn's 2nd cousin.  Evalyn was a ham in the car and was posing for pictures. We heard that day that my grandmother, Nanny, was not doing well, and we all knew that she would be passing away soon.
My cousin and me!
                    I spent two days at Emory this week for more tests and signing consents. I had some pretty bad back pain one day after the LP but thank goodness that feels better.  It was pretty rough but when I saw that earthquake and Tsunami that hit Japan today, I was more thankful for the hospital then mad about the wait. I met a lady that seemed to be around my age and she is also having a BMT at the same time I will be having one. We exchanged numbers and will stay in touch. It's not good that others have this disease but it is nice to not be alone.  Dr. Khoury said that all the tests that I have done for my lungs, heart, brain, etc have come out great and that I'm in complete remission. I have to be in complete remission in order to have the bone marrow transplant. The tiny bit they can still detect with be killed by whole body radiation and more chemo. He also took me off most of my meds for the next couple of weeks, yea!  Let's get this over with.
                 Yesterday, my Nanny passed away. Although it is very sad, we are glad that she is no longer in pain. I'm going to write more about how wonderful she is after the funeral this weekend. I want her to have her own page on my blog :)
Cousins and 2nd cousins and cousins once removed, ha ha
sometimes they just smile funny
                  I am very tired, but happy. I have been spending as much time with my family as I can and had so many appointments and trying to work, that writing this week has not been at the top of the list. It seems as though that I have some very interesting things, to me anyway, to write about. I guess I'll have 30 days in the hospital to write all I want. You might want to get off this email list while you still can! :)

Friday, March 4, 2011

The Fear of the Lord

I've been thinking about these verses a lot the last couple of days. 
Proverbs 9:10-11 


10 The fear of the LORD is the beginning of wisdom, 
   and knowledge of the Holy One is understanding. 
11 For through wisdom[b] your days will be many, 
   and years will be added to your life


Sounds easy enough.... Fear-wisdom- knowledge- many years. Fear: I think that it is more than simple respect but not feeling terror either. ( I read that somewhere). Fearing the Lord means obeying him and choosing to do his will even when we don't understand. I know that there have been many times that I chose to do his will but I think many more when I chose not too.


I know two people that passed away this week, both of cancer. Gene was one of my neighbors here at the farm and Marilyn was a patient of Dr. K's at Emory that was in the hospital the first time I went in November. I played the guitar for her and her husband. Come to find out, they live in Watkinsville, very close to me. Her husband called me today and said that she has passed, that the medications were not working she was so optimistic even to the end. I'm very thankful that both of them passed pretty quickly and didn't suffer. Still, around these parts, deaths really see to come in threes, but that is what happens when you live around a lot of old folks :). It's very sobering, losing these two this week. 


As the time draws nearer to when I will have the BMT, and be away so long, I have been a little weepy, very prayerful, and increasingly restless. I used to be a procrastinater, staying up all night to complete a paper, stuff like that. But as I have gotten older, I don't like to put things off because it makes me anxious. I have mostly been using my all my energy to take care of Evalyn and to get my paper work done, so using this time to do something productive around the house isn't working. There is a lot that I can't do that I love to do, and I think I'm morning the loss of those activities. Especially, gardening. I will be riding on the golf cart and can SMELL that someone is digging in the dirt. It's kinda sad. Other projects just don't seem very important anymore. We did finish our 2010 photo book that you should be able to view HERE. I think you have to have a snapfish account though. 


Jonathan has had four tests this week and he has had to study every last second. Good news is that he has a job interview lined up on the 14th of March. It sounds like a great company even though it is all the way in
Atlanta. Jonathan works so hard at school and taking care of us. He is the best husband and father ever. I'm so thankful for him. You would think that we would have a lot of time to spend together but the truth is by the end of the day, he is busy with studying, and I'm wore out from the day. Still, there seems to be times where neither one of us sleep very well. These next few months are really going to test us, our marriage, our faith, and I'm guessing, if we fear the Lord. 



We continue to be blessed with so many people helping us out in so many different ways. Food, rides, sitters, prayers, money, cards, etc. It is amazing to see what God is continuing to do through this situation. 

Thursday, March 3, 2011

Tuesday, March 1, 2011

What to wear, what to wear, where's my hair

On Monday, I was contacted by Be the Match to see if I was available for an interview on channel 11. Luckily, I already had a baby sitter and know a lot of people that can drive. I'm not restricted from driving but since I'm so tired all the time, it really wears me out. So later last night, I relieved an email about the interview that it was a live show I was going to be called Atlanta & Company. I immediately changed my mind about what I was going to wear the next day. Mr. Frank Reeves was my driver for the day and it was great to have his positive energy around. I wasn't very nervous. I think that everything that has gone on, I don't have time or energy to worry about being perfect or looking all that great. Not that I didn't, for someone bald. :)  I have told my story so many times that I could say it in my sleep. Now... putting on makeup with no eyelashes or eyebrows... that was interesting. I met Tiffany from Be the Match and had a great time talking with her about my upcoming transplant. The host, Christine , was positive and made us feel very comfortable. I think I would like to be on more shows, but as a survivor next time.  Click HERE to watch the video. I'll have some pictures up soon!