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, February 29, 2012

Is anyone reading this?

Does anyone know how to post comments? Or are my blogs so blah and depressing that you don't know what do say...  sharing things that you have went through, or how God is working in your life. Everyone seems to think "oh. what I'm going through is not so bad compared to you". Bullshit. It's all relative. Everything is.

If you have more money you may spend more than me, if you have only had a broken bone your "10" level of pain may be my 7. All my issues do not negate yours as not as important. So please share with me so I don't feel so alone sometimes in the world. Don't get me wrong I have a few that post comments but sometimes I feel like I'm just writing to the wind or God, guess it doesn't matter, I'll still record my story.

Over on the right side there is a link called blog directions, if you want to ask me about them go ahead. The least you could do is comment on how cute Evalyn is or how my face is fat. 0 comments depresses me.

Hope that wasn't too rude. I woke up with a backache and everyone's grouchy around here this morning.

Off to meet someone that went to Ikea for me, a meeting for my brother, 2 emory appts (we hope, you never know when they will stick your ass is the hospital, still haven't been able to get the med I need this week, hence why I bring the important things, my pillow and iPod) then off to 316 again and small group. I have 5 people helping me today... 3 for the tot and 2 to meet me. Pray for safe driving.... yes, I'm taking myself.

I'll get myself together and God will help me see things more positive... just gotta get on the road and turn on my forrest gump soundtrack. 

Tuesday, February 28, 2012

Deer in headlights

video
Forgot my guitar, had to sing alone.... for Barbara!

          Thank you so much for all of your prayers this week. The bone pain has not been as bad as last week or I'm just getting tougher.  Either way, I have been able to make dinner, get up two days in a row before Evalyn, wash clothes, caught someone when they fell (which was kinda cool since I'm the one people seem to keep catching) exercise, play with Evalyn, cleaned up Evalyn after an apparent water fight, visited with grandparents, and get organized with dates, and kinda cleaned the bathroom. Oh it's only Tues, not doing too bad. My sense of time/dates is whack.The list of things I have wanted to get done and either can't do or just didn't get to is a lot longer. I'm able to let it go now. Sometimes you make plans and they just don't work out, but that doesn't mean you don't plan anything.... I also received a special card from some of my former clients and their “momma”, it was so special. Makes me think about working again, but I know that taking care of me and Evalyn and sometimes my hubby is all i can do right now.  As soon as I’m not at Emory every week, I really want take Evalyn and us go see some of my “peeps”. For those that do not know, my former job for almost 5 years was a support coordinator for a wonderful company named Creative Consulting. I was responsible for monitoring services given by the state to adults with developmental disabilities. I miss it so much, I miss my people. Creative Consulting was there to let me continue to work from home as long as possible and Jonathan was able to graduate school. They continue to be a support to me by visiting, collecting money, checking on me, and just loving me. I don’t know what will come of my “employment” opportunities but like to think they would always have me back. I think about going back to school and doing something with Behavior Analsis to be able to write behavior support plans…. Or maybe I will write a book, or maybe by some miracle I can have another child and just get in with a home school group and renew my teaching lincence. The possibilities are endless. Right now, just try to sell some stuff on ebay, got some bids right now! Another possibilies I like to think about is having my own booth at a store to sell my art, vintage clothing I find, and antiques I find. I also love photography and could make cards and such.  I want to learn to sew but for some reason I just can’t read that book, I need personal lessons. I also love to play the guitar and sing and would love to do birthday parties and other events. Goodness. 
                      I go to Emory again tomorrow and I have still not been able to get the medication that I need for the CMV virus. Please pray that the levels are low and I don't have to stay. My skin is maybe half better but still has a ways to go. I had to put olive oil on my scalp today like I have cradle cap or something. Evalyn saw my legs for the first time yesterday and had some lotion on her hands and she rubbed some on me, she is such a sweetie. My eyes are a big issue right now with my 3 part regime 2x a day. They are really watering today, can't hardly see. They are all red and ugly. My bottom lashes fell out again.
                  My Granny and I had a nice talk again and she mentioned about planning a trip to Jekyll island because she has not been there is so long and if she is going to be old and sick she might as well do what she wants. I told her I know exactly how she feels and that Jonathan and I would drive. Granny said she would just throw a rag in a suitcase, we'd leave, and get what we needed there. Gosh I love her. Apparently my Dad  caught a pretty big fish there one day. We are going to plan it for real.  Now, now, don't anyone get uppity, I'd take this lady anywhere she wants to go. A cancer patient, a toddler, probably a dog named Wallace, and two very independent people in their 80's sounds like a great plan. Oh, then there is Jonathan, he's the most normal and will be in control of everything important. Other are invited of course but you might have to take on some responsibilities such as making sure I take my medication and wiping Evalyn's butt.  So we are going to plan and hope for the best. The BEST will be seeing and smelling the beach and seeing her happy to be there. Today the 3 of us just laid in the best together and took a cat nap. Best use of my time today. 
Meeting Barbara at her two year BMT party. She has been a good support  and inspiration for me. 


Evalyn had a blast!

All dressed up for the party!


At the library, she kept waving and getting a little closer, Then she finally gave her high five.

Finger painting...She didn't like her hands being dirty.


Pic I found of my Dad and her at the park a few weeks ago.


                                      Oh Thin Mints, how I love you. I'm going to have to stock up on them.

Ezekiel 34:11-15

New International Version (NIV)
 11 “‘For this is what the Sovereign LORD says: I myself will search for my sheep and look after them. 12 As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. 13 I will bring them out from the nations and gather them from the countries, and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and in all the settlements in the land. 14 I will tend them in a good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in good grazing land, and there they will feed in a rich pasture on the mountains of Israel. 15 I myself will tend my sheep and have them lie down, declares the Sovereign LORD.

Sunday, February 26, 2012

Really good movies

                I seen some really good movies lately, especially ones that are not sexually crude or possessed with demons., which I don't watch. One of them was "Midnight in Paris", I love the time period change in the movie because I adore vintage clothing, hair, music, makeup style and the simplicity of old times. Jonathan found an i tunes gift card and I think I'm going to get the soundtrack, it's so relaxing. I think I already said that I went to see the "Artist", it was amazing too. Very different since it was silent, downloaded that soundtrack quick. If you can see it in the theatre because it seems it would be too hard to talk through. Another movie, is an old one from the 50's, "Monkey business", when you see the cover you think that that it's mainly a Marilyn Monroe movie but she is not a main character to say the least, but beautiful none the less. The couple in the movie are Carey Grant and Ginger Rodgers. They are inventing a "youth serum" and end up doing all kinds of silly things. It is the funniest black and white to me since I saw "Some like it Hot"... Jack Lemmon in that movie is so young but still has the same mannerisms. Another movie was "Exceptional Loud and incredible close". It is sad due to it being about a kid that loses his father in 911, but the movie so well made. The star, a 9th grader, is the most amazing child actor, Thomas Horn, I have seem in a long long time, I think he should be up for an oscer for sure. He had no experience and had just won the kids jeopardy and the producer asked him to try out. Tom Hanks and Sandra Bullock are also in the movie and great. The other movie the Hippie in me likes, is "Pirate Radio" it has some sex, drugs, and rock and roll in it, but nothing crude like today's movies. The music is  great, an there are some really funny parts. I glad our government can't take my music from me I like too many different kinds!! So yea, we have been trying to see all the movies up for Best Picture but didn't quite make it. We watched "The Descendants" tonight, yes, I cried. Don't want to spoil it for you so I'll just say I really liked it, it had some really funny parts too it and reminds me precious each day is... plus it's set in Hawaii.... and if Dr. K would let me get on a plane, I might would go tomorrow. Well, a couple weeks at least. Heard Christopher Plummer won something and is now the oldest person ever to when an Academy Award. It took me a while to realize that he was the same person in sound of music.

Saturday, February 25, 2012

Picture blog 2/25

Evalyn was not too happy during story time at the library but it was her nap time.


She really liked this boat/seesaw thing... I hope to talk a Grandpa, PawPaw, or Poppa  to build one.  Your can turn it over and it's also steps. 

She was so serious at Rileigh's soccer game but said her  name all the way there. At least she picked out some nice beads for fat tuesday.

I'm pretty sure she has better coordination than me at this point.

Here is the 5.5 bass that Jim caught and gave to me. It was a beautiful day, Friday of course was very raining and windy and I had to clean the fish if we wanted to eat it. I have not cleaned a fish in a while and lets just say I'm out of practice and multilated the fillet. Jim had to come down and help me. It was thrilling though, being out in the rain with my garden boots on, cleaning a fish. 

Some of the neighbors, we had fishing fever!

The lake where we all live.

Where we clean the fish and keep out of the rain... Mr. Jim's dock. The birds didn't care about the rain, we saw red tail hawks, blue heron, and purple martins. Jim said that last year they didn't show up till the 28th of February. 

Tip and Betty just got married... here he is on his new dock. 

Friends Pat and Eva. 

Medical update 2/25

          Just a short medical update. I got a call this week that my CMV virus level is getting higher... that is the virus that most people carry but doesn't affect them, just mostly transplant people. Google it.... anyway besides starting the whole 3 part eye care twice a day, the new immuno suppressant, the triple steroids on Saturdays, and now back on the CMV medication, that of course has to come from a "special pharmacy", my body is bound to be freaking out.... better than dying, yes. They also want me to wear a blue mask when I'm outside.... poo. My anxiety at this point is that last week when I had to take the extra steroids on Sat, I had bone pain Sat, Sun, and Mon night, getting less painful as the nights went on, but nevertheless, no sleep doesn't help, just to take another dose of steroids to jack me up again. Thank God I was able to get some sleep last night. Well, like 5 hours, but taking a nap today will be impossible because I will probably be too busy running around doing things I'm not suppose to do like dusting, vacuuming, or planning our 25 wedding anniversary. Hopefully, I don't drive Jonathan crazy today and luckily, he is usually a calming presence. He got to sleep late this morning so hopefully if I spin out of control he will have some. I wish I could be Mary Poppins just on Steroid Saturdays.
            Please pray that I find supernatural releif from the bone pain, because nothing seems to work. Someone gave me the idea of using an electric blanket, but the comfy ones are so expensive, and I want a comfy one... can't have something itchy. So in the mean time, I will be in my recliner, with awkward heating pads wrapped around what ever hurts. I'm also having some belly issues due to some of the meds,still molting, eyes are manic, and my lack of ability to concentrate my be frustrating other people. My wrists and forearms are having a lot pain, probably from trying to clean that big ass fish yesterday. I meant big bass, ha ha.
             Other prayers needed is that I found out one of my friends Amanda, relapsed 5 weeks ago, but is doing well, but it's a bummer. She has a husband and I son. She has been such an encouragement to me. Her faith in the Lord is so strong. Also, one of my family members was contacted through Be the Match to be a potential donor for a 4 years boy in Calafornia... so exciting. If my illness can help save anyone else, I would do it all over again. Thank you for everyone that continues to sign up!  www.bethematch.org

Check this video out....http://www.youtube.com/watch?v=TUP3XqjN69M&feature=share ..... it is so funny.... I went through so much of this. I would sneak into other patients rooms and show them where their mute button was on their machine. I also put magic erasers over my speakers because the amount of noise was killing me. Thank God for Ipods.

Thursday, February 23, 2012

2/23 Photo Blog

Barbara and me at Pink Out to see the gym dogs!

We got to hang out with Ben and Amy Jo at the gym dogs. 

I was the last child to get a balloon, I think it was because I stuck my bottom lip out when he said  he was not doing any more. He was awesome, might have to use him for a B day party. Mine of course. 

This is the "ok I'm smiling now let me watch Kipper face."

Learning to ride and wear her helmet!

We are cheaply redecrorating our room a little. It only took  10 years to find another 70's  green lamp that is close to my other one. I'm going to get matching lamp shades, we are getting two twin yellow quilts (we don't share blankets due to our selfishness during sleep) and I'm thinking about a tree mural on the wall beside the bed that I will paint. Very exciting. 

Never thought I could be so excited about a scale, never had owned one until oral chemo made me weigh myself . I saw this at my cousin Amanda's house and flipped out and begged her to give it to me and I would give her mine.... it's meant to be in my bathroom. She's so sweet. That was after I got skin cells all over her house. 

The cross the Katie sent me as a gift goes perfect in my kitchen. Need to take a better pic. 
video

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

Friday, February 17, 2012

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.

Thursday, February 16, 2012

Evalyn's 19 months!

Wow, this month has really flown by.... or my chemo brain just can't remember things in order. Evalyn is really showing a lot of personality. Crossing her arms and saying no is a new favorite, then, she will change her mind and say yes if it is something she wants to do.... of course some things don't have a choice but I try to have he comply first. She is loving all thing girly.... which is the opposite of anything I'm doing now. She has to have her hair fixed, earrings on, a necklace, and loves to ooohhh and ahhhh at anyone else's jewelry. Strange child of mine. She even wants something on her lips so she can do the little lip smack. It's been a round few weeks and now she is taking antibiotics for the first time in her life, but I can tell she is already feeling better. Jonathan is on them too..... wonder what else they could put me on at the Emory Appointment on Friday... today... yes... I'm still up. Always get a little nervous. Evalyn continues to be such a blessing to everyone. Here are some pics of my sweet Evalyn Rose.
She loves to watch cartoons with Poppa Bill when we are lucky enough to eat breakfast there!

Evalyn with Grandma Verna, a friend of mine, and they only reason any laundry is done.


Showing off her new earrings.

We haven't learned not to pick the flowers in the neighbors yards.


This is my outfit from 30 years ago.

If you can't win as a Bulldog, then ride one....she loves to kiss these statues. 

Sister Anna came to help watch Evalyn and is doing a great job at an animal shelter in Covington. 

Four Warrens in a pic.... rare...my aunt Judy got me a Rasberry Cream Cake that is soooo yummy. 

Giving her Poppa Bruce a big kiss... sorry Fay,  had to crop the pic!

This week was so hard.... Thank you to those that send cards, money, food, baby sat, helped with plants, dog, called, and prayed. Thank you, Thank you, Thank you and God Bless. We are truly blessed to have support through this.

Love,
Heather 

Tuesday, February 14, 2012

Happy Valentine's Day

                                              Love bears all things, believes all things, hopes all things, endures all things. 1 Cor 13:7



                 I had planned on writing today about how my sweetheart and I met and then met again. It's a wonderful love story. Of course, I planned on cooking dinner and having sometimes nice on when Jonathan got home, planned on taking a nice bath and telling all about this wonderful women I met today that created skin products for sensitive skin, planned on the heat working today, which for some reason is not and the guy can't come out till tomorrow, planned on doing laundry, which actually got done because Grandma Verna did it, and had some more plans too. But that's ok, not the end of the world. I'll share those stories. Take out and maybe a night stay at the grandparents. Can't say I can be too romantic when my skin is literally peeling off. I don't even feel that stressed about it all. I guess when you come so close to the brink, or maybe are so close to losing your mind and life, you just " don't sweet the small stuff" as they say. 
Still wondering who "they" are.... 
Happy Valentine's Day! Stay Warm. 

Monday, February 13, 2012

Spirits are lifted as I Molt

            I want to share some of the encouraging and interesting media/web pages, I have seen over the last couple of days. We watched a movie called Seven days in Utopia and it really lifted my spirits. I wouldn't say it is the best made movie and it does have a " there's a God in Heaven" slant, which is good. It wasn't crude, violent, no cussing, no nudity, drugs, etc. Amazing, they can still make stuff like that. By the way, they took my Cosby Show off instant cue on Netflix.... very sad. Robert Devile is in the movie and he is always funny to me. One of the ideas that I took from the movie was that I needed to bury some lies about myself. I'm not done figuring out what those are, but I'm sure I have some issues. My purpose here is more important than any sucuss, any accomplament, my weight, my looks, my plans, etc. This also goes along with a quote from my quote box, the someone name Jill made for me, the " Hope is not a feeling, it is something that you do." I guess that always made sense with faith and love, but I never thought about hope because sometimes I feel hopeful and sometimes I feel like dying. So when I feel really bad and down, I can choose to still have some hope. And I do, just smaller than a mustard seed at times.
               I also read a blog from a mom about being sick when you are a mom and it really took some of my guilt away about this last week when we were all sick. We sat around too much, I didn't get anything done, didn't go exercise as much, ate like crap, yada yada, but what i did do was live through it. We all did. And here I am, still alive. Well, how bout that? People continue to be positive, sweet, generous with time and funds, that my faith in people as a whole has increased in the last 2 years. We had someone send us a check and presents for Evalyn. We also had an offer for Jonathan and I to go away for a night and they would watch Evalyn. Someone I care about has not smoked for 5 weeks! I was able to hang out today with my favorite 15 year old, and I will claim her as my own, Corynne. I have a little girl that bring such joy to the world and brings me her little gold bible and points out Jesus and gives him a kiss. I have a husband that loves me despite my moods, health, weight, hair length, ability to complete tasks most mothers do with ease. He is truly wonderful and as my sister said last weekend "the perfect guy for me." My grandfather fixed me the best cheese toast on Sat night. A little boy, William Robert, was born healthy this weekend. With so much more misery in the world, now and in the past, I  continue try to be content in the mist of pain and suffering. I couldn't not do that without the love I know the Lord has for me and the people that have pulled together to help us. I only hope that they are blessed as they have given times 7, or 10, whatever the bible says :) I also found a nice easy yoga video on Netflix called Yoga for Aches and Pains.
             I have joy in my heart to say that whether I sleep at all tonight, have horrible pain, or anything else, God is in control and I can rest my heart there. I don't have to understand why. Hmmm.... there's one of those lies I need to bury.  Oh the molting of my skin right now has to be number 3 on my list of gross things that have happened the last two years. You don't want to know about the first 2... just not ready to share.

Friday, February 10, 2012

Where's the Cheese?

            I do feel that I have very cleaver and interesting things to write about but this medicine makes my head feel all weird. I must say, I'm terribly exhausted. We have all had a cold for what seems like forever. I haven't had that much sleep, shedding like a snake (GVHD rash), have had more bone pain, on anti rejection meds again that make me feel like an air head, and my eyes are either watering or super dry. At my last appt., my sugar is high, my platlets are low, the CMV (that virus I don't want but have) tested a "weak" positive, and he said that soon I will start going back down on the steriods but up on the anti rejection. Now the GVHD is effecting my eyes so I have to go see another doctor and get some drops. Between drops, sprays, creams, pills, I'm so tired of spending so much time to take care of myself. Do I sound like I'm complaining? Yep.
            The good, is that I was able to go see The Artist and go out to eat with my cuz Andy, see my friend Danielle and her family at lunch before my emory appt, had lots of people help with Evalyn this week. She is still obsessed with having her hair fixed, her skicker earrings on, and not having socks on. I wish now, I would have had her ears done when she was little.... better go buy some more of those stickers. We have also had someone come and clean the house some and my grandparents have been feeding up some great breakfasts.I also got asked to sing the National Anthem again at the Be the Match Run in the fall.
             Jonathan is going away for a night to see a friend this Sat  and Evalyn is going to her Grandma Carols.... momma needs a break and I'm sure that he does also. I could make all these plans of what I'm going to do, what I have meant to do, like clean out my closet, finish a painting, but I will probably just sleep a whole lot and go eat at my grandparents house. I hope to get a picture of her and Poppa watching cartoons together, It's just too cute.
               When I'm on so many meds and/or not feeling well. It is so easy to feel like a horrible wife and mother. We have eaten like crap all week. I feel like the house is all cluttered and messy. I feel that there is something I'm suppose to be doing but I just don't know what that is at the moment. Right now, I'm trying to decide if I should like Evalyn to the doctor about her cough and risk gettting something worse, or ride it out a couple more days. Oh, you mom's and maybe Dad's will appreciate this story. On the way to Emory, I looked down at my nail and one of Evalyn's boogers were still there. Gross.
                      As for me and my relationship with the Lord at this moment, well, it's been very hard to read with my eyes like this and the medication is making me numb. I've been doing a lot of praying, sometimes yelling, when things get really hard. I used to feel there was a purpose to all this, and at times I don't feel like that anymore. I feel like a lab rat that's just paving the way for research. Where's the cheese?

Thursday, February 2, 2012

Helen and first sprouts






Check out these video's, they are so cute. Video one, video two, video three, video four!

We had a great time in Helen and some friends of ours hooked us up with a sweet hotel room. Never stayed in a room with TWO flat screen T.V. ! We played putt putt, which was one of our first dates when we were 18. I was really bad, it didn't help that every time I looked down, my nose or eyes were running. Good excuse anyway. We also went to a winery and bought a few bottles after the taste testing. One is a peach, and it is so good. We also flipped through the channels to remind ourselves, again, why we do not need cable. I really wanted to go sing karaoke, but they smoke in the bars there and I almost lost a lung just being in there 5 minutes, so we left and the world of Helen missed me singing "I feel the earth move." It was sad. After Emory on Sunday, we were all coming down with a cold or sinus issues and have been laying low ever since.
         I pulled up Evalyn's hair for the first time, in what my ex-husband calls, a sprout. It is so cute and she doesn't want to do anything in the morning before her hair is fixed. She is trying to say all kinds of words and names. She loves to say I, Fay, Papa, and even said rain today. I can't remember all the words she is saying right now. No real interested in potty training anymore, but she loves her big girl pull ups and directing me what I should do in the bathroom. It's so sad to hear her cough and sniffle. It's even sadder that I can't sleep between the three of us hacking. I'm so tired. I hope to have a great visit with my sister and brother this weekend when she comes up. We are suppose to try a new church on Sunday, but I never make any promises... Sunday mornings are hard! We are happy with our small group but know that we want Evalyn to grow up in church, we just have to find the right one.