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.

Saturday, July 30, 2011

This must be God's Plan because it Isn't mine

video

                      Evalyn at the pool. Uncle Daniel came to help since I can't get in yet.

               As most of you know, Jonathan started work this past Thursday. We are very proud of him but also miss having him around. He is working with a lot of ladies that like to cook so maybe I won't worry about him eating well. "It's not glorious accounting" he says. Whatever that is....   Here is what goes through my mind and on facebook.

Me: I put him through school for 2 years and what does he do? Goes off and gets a job and leaves us. 
Others: That was the idea, right?
Me: Yep, but all this other stuff was not the idea. 

            Sound ungrateful, I know. It's just that now, I'm more responsible for house, shopping, cooking, Evalyn, taking care of myself, driving myself to numerous doctors appointments, yet, my state of recovery, well I'm still recovering and will be for a while. I'm still not suppose to clean, such as vaccum, dust, or give into my urge to get out a saw and make my own dang potting shed. Mildly annoying things. I'm still not suppose to deal with poop, but I have no choice about that, I just have to be careful. That includes dog poop. But hey when there is a big pile in front of ya, are ya just going to let it sit there for someone to step in? Nope. Don't forget, I'm still trying to work as much as I can and that is very difficult. I work at night, when I can get a sitter, weekends, and sometimes at 3am. I get stressed out  I'm probably over reacting and know that if we obey God and trust him we will be on the right path. No one said this would be easy, this life thing. 
              We are trying to implement some good habits such as exercise, date nights, saving for another car, continuing to pray and do devotions together, etc. Jonathan has a gym membership now and we are trying to figure out when he is going to go now that he is working. I'm trying to keep going to the free cancer recovery yoga at the hospital on Thursdays because it really makes me feel a lot better. It's work out yoga. We are focusing on our joints right now and I can tell that it is helping with the pain. I'm hopefully going to start a dance class on Monday nights, theater and broadway dance, and would love to be in a local musical one day. I've also been thinking more about Evalyn being around more children since my immune systems is stronger and hers is also. I still have to be very careful though, so I have to talk to the doctor about going to big play groups. We have two new people in our small group who have offered to watch her while I work sometimes and they have two girls, so that may be a good option. 
            Today is my father in laws birthday. Frank has done so much to help us with cars, remolding our home, repairing things around the house, etc. Without him, we would not have a the much needed fence, the new and wonder kitchen, lights around the house, and so much more. Frank, thank you for all that you do and have done. We love you and hope that you have a happy Happy Birthday!!! 

Wednesday, July 27, 2011

Defining a Date Night

Dating at the Botanical Gardens.

              “Every couple should have a weekly date night after children.” Heard that before? Well now that Jonathan is going to work full time and I’m grown up now and realize that you have to MAKE time to do what you want to do, we feel that it is important. However, what constitutes as a date.  Just going somewhere alone? Does running needed errands and going to a thrift store count? I don’t know. Not very romantic.  It would easier to have those if there was money to spend. Does a movie count, I mean you don’t even talk during a movie, at least if you are looking for a cheap pair of pants there is some interaction. We are too cheap for popcorn but we have been known to bring in random items such as honey baked ham sandwiches, pistachios, subway, and a beer to the dollar theatre. Yep, we are cheap at times.
              Maybe finding something in common such as going to a shooting range, dancing lessons, or taking turns finding something different.  Again,  the money thing, we gotta get out of the hole and we need another vehicle soon, preferably a four door truck or SUV that will hold the whole family (big dog too) and not kill my back when I get Evalyn out. Luckily my Dad is letting us borrow one of his cars for a while. Thanks! Does going to look at vehicles count as a date if we hold hands and kiss during a test drive? We are interested in the shooting lessons so we are going to check into it, maybe we can go 2x per month or so.
1st Anniversary 

             Finding consistent sitters is a whole other story. If we have to pay for someone that’s even less we can spend. We are coupon people, not the crazy kind no offense, but Athens always has great coupon books and we love them!  My best sitter here, and my closest code red person, is about to get married and move to Atlanta. She’s a country girl, I’m kinda hoping she comes back soon cause she is a good friend and I’m going to miss her a lot.
               Back to date night….. I’ll get back to you. Recommendations welcomed. 

Tuesday, July 26, 2011

Medical Update 7-26 The Wal-mart trip


             We got the results back from the tests on Friday. The CT of my lungs looked great, not sure why I’m so short of breath but it’s nothing huge. The MRI came back that I do indeed have too much iron stored in my body due to  all the blood transfusions which research shows can cause other diseased later on. The body is unable to get rid of extra iron on it’s own for some reason so I have to start a new medication called Exjade. I had to sign a release to get the prescription, get it from a special pharmacy, and tomorrow I have to talk to someone about side effects. I have had some bad side effects to medications but have not seen a list like this where the common side effects look like rare side effects of other medications. And…. It’s says not to take with prednisone. Yea, yea, I’m sure that the benefits out way the risks but I’m freaking out a little here. Please pray that the side effect are nonexistent and the iron gets out of my body soon. Funny, Just 8 months ago, I was too low and was taking iron.
                   There is a lot going on with Evalyn being so active, lack of sitters, me trying to work, Jonathan about to start full time, med changes, insomnia, horrible cramps, clothes not fitting, blahhhh. I’ve been generally happy go lucky but maybe since I didn’t sleep last night and then found out about that, I just feel ill. So ill, that I had to leave the house and walk around Wal-Mart, yes I did have stuff to get, because I needed to get some exercise and it was too hot outside to do anything. I just wanted to be alone for a little bit and didn’t want to ruin Jonathan and Evalyn’s fun by being a negative Nancy. After the laps around Wal-Mart and purchases needed c chocolate, getting the lady at the case register to agree to become a Be the Match donor, I felt that I could return home with a smile. 

A picture blog - playhouses and aliens

We love our golf cart rides. 

Fun and Sean and Mirka's at the pool party. 

Sister Anna, Jonathan, Corynne, and Evalyn.

Really, could those be my eyes?

This was her birthday and she stayed up past her bedtime and started to go wild in the wrapping paper.

The dying butterfly.

In her new playhouse, she loves it!

It has a place to plant flowers, water and sand, sink, and tool area. So cool!

My arch enemy, AT&T was in my site....... I though you all would
have a more impressive building for me to day dream about blowing up. 

Self portrait before date night. 

Long Story.... but please stop me. 

My handsome man..... I love you!

My Lola wig and pink shoes.... I didn't look too shabby.

Aliens at the GA aquarium? 

"I'm not a fish, I'm not a fish"

This suit is going to fit her for like 3 more hours. 

Sunday, July 24, 2011

Medical Update 7/22

           The Emory appointment went well but we don't have any of the results yet from the MRI and CT, I could have waited but decided to leave early instead. If they find something that requires immediate attention, I'm sure they will let me know. I will call on Mon or Tues to see and get copies. The CT was easy but the MRI was not what I expected. I had to change into scrubs and was in a tiny tube that had very loud buzzes for a good 20-25 mine. I should have been more informed so I would have known what to expect. They dropped the steroids down so that is good, please pray the rashes  and whatever else is under control by my new immune system, and I don't have to go back up on the meds. My sugar is high, I'm still swollen, still having headache and cramps. Mom said that this is a fat stage and everyone has them. Whatever, I say screw steroids and all their side effects. I read that even if I starved myself, I wouldn't lose it because it increase the stress hormone cordisol that redestribues fat to these areas. I asked my friends if I could borrow their maternity clothes for a while, this baby should here within 6 weeks :). I hope that baby is named " no more steroids".
              I was able to get some people, hopefully, to sign up for Be the Match as a donar (physicially) and a donar (financially) for the run/walk in Sept. Click HERE, if you want to join my team or donate.
 Help save a life like mine!

Tuesday, July 19, 2011

Wonderful Weather for the Cape Party!

Videos: Click here to see the video Jonathan made of her first year and click here to see the amazing video Shaunna made of the party.            
She's going to have a sweet tooth like her Daddy.

During the dedication, she had a comb in her hand the whole time, I was not about to take it away from her!

Dancing with my sweet husband



               We had such a great time on Sat thanks to so many people helping out! Our family threw a party to celebrate Evalyn's 1st birthday, Jennifer's (sis) 25th, Jonathan's graduation with a BBA in Accounting, my 100 days past the transplant, AND a baby dedication.  Food, Fishing, Music, kids playing, and the ability to thank so many people for their prayers, food, financial support, baby sitting and just overall encouragement made the day very special for us. We had John on the keyboard, George on the clarinet, Dana willing to let us borrow many items, Nelson taking pics, Anna and Corynne helping with Evalyn and balloons, both Dads on balloons, Andy cooking BBQ, Fatz helping out with chicken fingers, everyone bringing food and drinks, people jumping in to sing and play, ladies helping set out food, Amy Jo with the kids fishing, Frank letting us use his dock and taking trash, Michael bringing ice, Mirka, Linda, and Shanna making cakes, Shaunna taking and making a video, Sean leading the dedication, Daniel and Tommy carrying heavy items, Carol purchasing and arranging flowers, and Mom was in the kitchen, tied and decorated with balloons, and helped with Evalyn. I know I'm missing something and someone..... feel free to comment if you remember others that helped.


Funny how all three of us can sing! Didn't get a pic of Daniel singing though ::(

There's Daniel playing the beat box!

The kids seemed to be having a good time. 

The Reid siblings

            I'm most thankful to the weather being so wonderful! I loved singing for the first time in ages and loved dancing with Jonathan. Evalyn seemed to like her cake and was in a great mood for her party. I'm so happy that people caught fish that day and that everyone stayed safe. Not many people went swimming but my sister and her friends enjoyed a good game of cornhole. Jonathan made a video and we had a picture of Evalyn as our party favors and we gave a special frame and picture to our sitters.  People also brought some nice gifts and cards, which we are thankful. Jonathan said that he can remember 111 people but we think there were more. We missed those of you that could not make it but there may not have been enough food!! That BBQ was soooooo good.
             Thanks again for your continued support and love!
Love,
The Cape Family

Monday, July 18, 2011

Medical update 7/18/11


             Below my neck is so tired, I literally feel like I don’t know where my feet are…. I think it’s kinda the sensation where if you had a an amputation but you kinda felt you still had an itch.  I never thought I would brag on support hose, but they have really helped the swelling go down in my feet and ankles. They don’t hurt as bad either. Geez, have you have no idea how hard these knee highs are to get on. It’s like panty hose times 50 at least. Wow, and expensive. Did NASA create them to keep blood flow up? NASA invented the bed that I love so much…. Stop calling me, temperpedic!
              I still have the rash thing going on but it seems to be getting better. I decided that the pool water on Sat was just too cold to risk making it worse. You have to weigh whether a trip to Emory is “worth it” or not. I must have done something though because my throat is hurting. As you can tell by pictures and soon to be posted video’s I am pretty swollen all over. I have the prednisone pot belly, feet, and neck. The swollen neck is making me snore a lot, which I feel is aggravating my sinus cavities even more and causing increase drainage along with some self-esteem psychosis.  (I was supposed to be a Dr.)  I may also have some issues with my sinuses after have mucosis so bad during the BMT. That was where I had sore and really gross mucus from one end to the other. Yea, it was bad. Most painful thing I have ever gone through.  
            No worries Mom, I’m going to the doc tomorrow. Not just any doc, either. He is a newer internist in town that was the head of the Dept of Internal Medicine at Emory University. I’m hoping that Dr. Khoury and he know each other but if not, I’m sure they will figure out how to start coordinating some of my care here. I didn’t want to pick a random ENT and waste my time. Everyone seems to want you to have some type of surgery now days; insurance pays out big, in case you haven’t seen our statements.
           So far, over the next 2 weeks I have an MRI of my liver, a CT scan of lungs, a bone density scan, random blood labs, and there will probably be some type of scan of sinus cavities. Discussions of menopause issues with my OBGYN should be interesting next week as we figure out what should be put in my body in the mist of this quadratic formula. My prednisone will be reduced and hopefully keep reducing and I will be starting the oral chemo again. Please pray that the oral chemo doesn’t give me migraines as it has in the past and make me so tired.
            Right now, I’m going minute by minute and glad Jonathan is here right now to help with Evalyn. This too shall change. However, I could be up in two hours organizing something. I keep thinking that recovering from this will become more stable, then there are days like this.  Music notes… "Mama said there would be days like this…."

Friday, July 15, 2011

Evalyn turns One!!!

It's amazing that it has been a year since our little girl Evalyn Rose was born on July 16th at 9:13 pm. Next, thank God for Epidurals. :) Please pray our party goes well and God continues to bless her with good health.
Here are some of her one year pictures that Grandma Kim bought. Wait till you see the video that Jonathan made.













Thursday, July 14, 2011

Medical Update 7/14

Hello everyone,
           We have been so busy with work, Evalyn, finishing touches on the party, I have not had a chance to update you, or just write down for memories how I’m feeling. I had another medication change this week so that all always throws me off. I don’t know if the heat has made it worse, or what but my feet are as swollen as they were last summer when I was pregnant. Really, will I ever get to wear the 25 pairs of cute shoes I have again? How is it that I look and feel pregnant two summers in a row? Geez. I’m going to have to go get some support socks to sleep in today to help the swelling go down at night. I’ll die if they ask me “When are you due?” I’ll just die, right there, and may bite the person that tries to give me CPR…. Just let me go in peace.
           The cramping started again with the lowering of the steroids and you would think I would be sleeping better but maybe I just don’t sleep. I could make a killing if I could figure out what to do in the middle of the night to bring in income from home. Well that sounds kinda bad , I take that back. I had some headaches, stomach aches, and just whole body aches. I’m sick of taking 13 pills in the morning and more at night, weighing 25 lbs more than I should, and I’m tired of telling people about it. But what if I become one of those people who just lie and say “I’m fine”, “I’m great”. Nah… sometimes I just say,” I’m ok right now but it depends when you ask…. 3 hrs ago I was laying in the bed with cramps that were making  cry, 5 hours ago, I was playing the guitar and taking care of my Evalyn Rose.” People sometimes what to hear “fine” so I enjoy seeing their faces. Oh yea, I’m sick of being hungry. Eating is like a chore when your on this medication because you can think of anything else when you feel that your stomach in caving in.
           It’s 5:30 am and I think I got up at 4 am, I better go lay back down, I don’t think tomorrow is going to be more restful. The good thing is, mentally and emotionally, I’m feeling pretty good. I try not to stress too much, day “I don’t know” or “I don’t remember”, continue to choose when to talk on the phone, lay down when I can, and just do the best I can everyday. I’m seeking the Lord’s guidance and that all I can ask of myself. Is my bathroom dirty and floors need to be vacuumed?  Yep.  Oh well. 

Tuesday, July 12, 2011

The Monastery and Writing

They can even make a pine tree pretty.
DISCLAIMER: I wrote this at three different hence the change in tenses. No energy to change now, just know I do know what day it is today, I didn't yesterday, but I do today.

               I’m always a little anxious before going on trip. There’s a lot to remember you know, especially if you don’t really know what to expect. Plus I have to have a whole bag of meds and layers of clothing as I switch from hot to cold. There there are my “activities.” I brought my guitar, my book, my bible and devotional book, journal, and yoga mat. So far I have used all those. I almost brought my bike, but it wouldn’t have fit, my feet are super piggy right now so it’s hard for me to walk a long way.
This old elevator was awesome, you had to use a key to "call" it down.

             You can read more about the history of the monastery at www.trappist.net. It’s a really neat place, peaceful, loving, and relaxing. They have a lot of different types of retreats but you  can also just come for a private retreat, I think that is what I will do next time. I think it would be great if our small group came here for two days in the spring.
Look at my eyelashes.... pay no attention to the the moon face....

            My Grandma Judy brought me from Athens to here, long story, my cuz grandma but we claim her. We stopped and got some peach ice cream to celebrate my 100 days, and just because I like it. We went a beautiful way from Athens to Conyers, through Rutledge  and so on. Judy’s a great driver, not that she shouldn’t be, but she is not a spring chick anymore. For weeks I have been wanting to get a picture of me running across one of the many lines of white wrapped hay bales. It’s one of these urges I just can’t get over. So we pulled over but the hay bales where on there sides and when you get up to these thinks they are huge! I’m going to have to bring a step ladder, or my husband to boost me up. Let’s just say it didn’t work out and I need to work out.
Hey Cox cousins.... I found Nan and Pop's old couch, it's in the Gutalupe Chapel.

               My Papa Jack brought me to the monastery before and I have brought the girls in the past. My room is simple, yet comfortable and I’m sharing a bathroom. I didn't take a shower the whole time because since being in the hospital I'm really weird about bathrooms and this one smelled like mold and the floor always seemed to be wet. Yuck. One of the most exciting starts of the trip was riding in the old elevator which requires a key and has a medal door that you have to open and close. It is very small and I just felt I should be dressed up, with gloves, and the whole movie star look. They have prayer services that you can choose to go to or not. This is a Roman Catholic monastery so of course they have mass but they also have a couple more types of services throughout the day. I have made it to the 4am service/meditation both days. Didn’t even set an alarm, but then skipped mass and came back in for breakfast. I would like to come back Nov/Dec when it is cooler. One of the things that I love about the place is that they have GA’s first conservation burial ground. Check it out, it’s a cool idea! I learned how they chant and one of them really seems to keep my Zen going even when I arrive home to chaos, which I did.
Each brother is part of the community for life once they join.

         Not that I have not come away with anything about writing, but I didn’t expect there to be a little bit more lecturing/teaching/structure and less QA. I just got up and walked out of the last session to write and take a nap. And my butt hurt. Others seemed to be enjoying it but I was falling asleep. It was my normal nap time.  I have been up since 3:30 am. Like I need an excuse.  I have come away with quite a few reading selections of books they recommended, some good quotes, and the feeling that I don’t have to be an editor, not that I ever did. I met some very nice people and would like to write more about them once I check out some of their writings/ blogs. My favorite person I met, is a young lady from Marietta, you know who you are. J  Oddly enough, I met one lady who’s husband passed after a BMT, one lady who’s husband will need one because he has CLL, and one lady who’s friend had a BMT. There was only about 25 of us in the group. We watched a DVD of a writer speaking named, Annie Lamott, and it was probably the best thing that the writing part of the retreat brought to me. She was just so funny in a quirky way about her writing but also about life. She also made it real that getting “published” is not going to “free” you or “make your life” just like have a child for those reasons won’t do it. She wrote many books but the one I’m interested in is Bird by Bird and before I have another child I’d like to read “Operating Instructions”.


              One thing that I still trying to wrap my head around is censoring feelings about certain people on a blog vs a book. I think there will be a day, if not just for me, that I will add more details of my life and specific issues that have gone on or is going on now. Things that have been done to me, that I have forgiven, or things I have seen done to others.  But on a blog for the whole world to see, just like that, seems like it would just make some relationships worse. However, I’m a believer in the truth and so I think one day I will have to cross that bridge with a few people and decide if it is worth it or not. For now, you only get 85%. That pretty good considering I’m not playing with a full deck. Never was good at cards. 
Anyone know what this symbol means?

Saturday, July 9, 2011

Spiritual Waves


            
           I’ve been thinking about this for a while, and thinking about how to write about it. I just kept going into circles so I decided to just write and let my hair down.  My chin hair down that is, I shaved my head again. I got rid of the chin hair too. God, I’m obsessed with hair. It’s not my fault, it didn’t have to come back. I am enjoying mascara again, but this hair everywhere is doing nothing for my self esteem. 
                There are times in my life, and yours I’m sure, where you feel closer to God, or people, than others. Makes sense. But why does this happen? During my hospital stay during the transplant I felt so alone and did not hear from God in dreams, what I could read which was not much, and didn’t feel his presence. Still, I knew he was there, just being silent for some reason. When I left the hospital and recovered a little, all of a sudden I had an intense hunger for the Lord, for the word, for prayer, to FEEL the love and joy of God. Then 2-3 weeks later, I had that bad steroids crash and after that was not able to get back into my routine (getting up at 6,  devotion, exercise/writing, then getting Evalyn), so it through me off . Something through me off.  I’m still off. So after I was first off, I didn’t have the hunger as much and I felt that I was wrong. Did I do something wrong? Did I not seek the kingdom hard or long enough?
                Even though I couldn’t make it to my 6 am appointment, I still tried to get my devotion in at some point during the day but there are always distractions and heck, it may be nap time and I’m rereading the same thing over and over again. After the chemo and radiation it seems to be even harder to focus, although my brain has always moved at a faster pace than most. I always thought it helped me burn calories and why I WAS such a bean pole. Tangent: No I’m not getting fat people, well I am, but it’s the steroids. I weigh more than my husband, the same as when I was pregnant and more than my mom or sister. So give me a break if you think about saying “your filling out” or something stupid because I’m still on steroids and may snap. Hmmm… so back to prayer, meditation, and sweet things Jesus likes me to write about.
                So I’m mulling this over in my mind going back and forth between insane thoughts such as “ well if the spirit left maybe be need a break from our intimate relationship we were having” or “ I really must be doing some wrong and maybe should spend more time DOING something instead of sitting here.” If you only knew what went on in my brain. So I decided that, like love, seeking the Lords face is a choice. You have the infatuation love that you feel toward a lover and then you have feel love that develops over years of trails, success, and the choices we make. I don’t always feel like taking care of Evalyn and sometimes it’s not about my physical state. I’m I a bad mother for saying that, I don’t think so, just too many people are afraid to be honest.  I don’t FEEL like showing love to the idiot, obviously I have other issues to work on, in my way at the store that may need my help so they don’t have to hunt down a  phantom  employee. I don’t FEEL like always showing love to my husband and thinking about how I say something not just what I say. And sometimes I don’t, sorry sweetheart.
              Thinking and praying about all that made me realize that all this spiritual ups and downs are not about feelings. For me it’s about obedience. The devotion book that I just love…. Come away my Beloved, said in one passage “ Holiness is not a feeling-it is the end product of obedience. Purity is not a gift- it is the result of repentance and serious pursuit of God." God has called Jonathan and I to do a devotion together every day we possibly can, so we do. Do we always want to too? Nope. God called us to work through this last semester so Jonathan could graduate despite that to the world it looked like a crazy thing to attempt. It’s not about what the world thinks. I believe there will  quite a few more risks that our family will take and if we truly seek God, it will work out. Does that make it any less frighting. Hell no. Makes me want to have a glass of wine at the thought of what all this could possibly be preparing us for. God have mercy and grace.
                 Once I decided to pursue the Lord even when I don’t hear or feel him, there is the old problem with prayer vs meditation. As it says in the book, Eat Love Pray, prayer is easy. I can ramble all day on at least one side of my brain about this or that, or this person, or even my dogs, for safety, Evalyn,  for less pain, yada yada.  But to be still. Whew!  Most of the women in my family I like to think of as birds because we can be flighty and not focused. I don’t know much about birds but that is how I feel right now.    sec for ourselves to have a bathroom break since we have been holding and now may be wishing we had kept that extra pair of underwear in the car. I’ve decided that is actually a good idea. God usually has to send me a neon sign, or cancer, to get my attention. Geez, I’m so stubborn and rebellious it is ridicules. I have the urge to be flea dipped or something, maybe the monks will make my shower water holy water tomorrow.
                      Be still and know that I am God. Be still!!! As you know, I’m at the Monetary of the Holy Spirit for the weeked for a writing/journal workshop.  I decided to do my yoga in my room due to the heat the mosquitoes that have breeded with the ferrel cats around here and  have not responded to my usual genius effort to warn them off. The yoga feels good and I start of well, repeating part of a verse that I had read this morning about being a living sacrifice and renewing my mind. (Romans 12:1-2) Then I went to clear my head and just listen, even if there was nothing said. Unfortunately, I was still talking to myself.

What will I have for my snack later, my brain said.
Shut up.
 Man that baked chicken today at lunch was the bomb, I  should write down to remember to get the recipe.
 Do not move a muscle!
When we get home we should change out some of the frames in the living room.
Jesus! This is just how Elizabeth Gilbert (eat,love, pray) explained how she felt when she went to India and was trying to meditate.

     I know, I that it is completely stupid to be so hard on myself sometimes. But don’t you point a finger at me because I know I’m not alone. Only recently, because of my husband, there are times I can just watch a crappy show and BE with because he likes it. I’m still working on the sports. Why do we always feel we have do more, More, MORE? That we are not enough and just because we have not reached the place where God had has molded us into his perfect will, when we are trying our best. It’s the journey right? Journey on my friends and family. Let’s seek out ,  obey the Lord and trust him to do his great work in and through us. 




Day 100 7/8/11


Balloons for the staff! 

Day 100!              
               Day 100!! Today was a great day. I felt better, I was driving the Cadillac to Emory, I had a car full of balloons to hand out to great staff, had on a shirt on I made, and plans to go somewhere by myself. Oh and some mint green New York and Company slacks I purchased at a thrift store for $2.99. I was not as awake as I usually am on those Emory mornings and had slap myself a couple of times. Maybe it was because it was the first time me going alone and I didn’t have anyone to talk to… so I called my mom that was driving to work and that helped some. I had a one women parade and every section of Emory I walked into to I would show my shirt and balloons and announce that it was my 100th day out of the transplant and everyone would clap. The staff seemed to appreciate the balloons.Sugar, not vinegar people, catches more butterflies but you got to do stuff like that for the right reason my VIP is just the bonus.
              I GOT PERMISSION TO EAT SUSHI!!
             I’m also scheduled now for every follow up test in the world in the next month or so, but it’s not a bad thing, just more stuff and now that Jonathan is working and I don’t have too many sitters it makes it more difficult. Dr.K took me off one drug, added back another, said I needed to see the OB ( weird fried ovaries),EMT (weird sinus stuff), and Dermatologist (weird rash), and at Emory I’ll be getting MRI’s of my liver and spleen (too much iron) and CT of my lungs (possible air trapping, hmmmm weird.  I’m thinking I should be able to find a one stop DOC. That would be a great name for it. Like a Trip Quick for sickos. Real sickos, not the crazy kind. Well, I guess that doc should be there also.
             Hopefully, I got more people to sign up for the BE the Match run/ walk. Have you? I brought more cards that are the right size and left a lot of my business cards that have my blog and the Be the Match website. Be the Match is working on a interview to publish about me and my journey, it’s very exciting! I wish I could meet my donor now and thank them with a big kiss. I wonder what she thinks when she thinks about me now. Someone remind me to ask her that. Someone I know always does that… “remind me to get this, or call this person, or do this.” Hello, she basically has an I phone, don’t they have apps for stuff like that? I’m sure an I phone’s IQ is way higher than mind and the capabilities of reminding far better in tune with the actual day of the week.
              I’m here at the monastery now but will write about that later, yes I brought my memory foam mattress pad. I'm feeling a lot better, by the way, thank you for your prayers.  

Thursday, July 7, 2011

A picture blog - on and around July 4th

              July 4th is one of my favorite holidays because it's always so silly. That's why I love Halloween too. We all decorate our golf carts and have a parade and get decked out in my favorite colors. This year was extra cool because my mom bought me some of the most tacky danglely (sp) 4th of July earrings. I loved them so much I carried them around in my purse to show people that I "get" to where them within a matter of months. But like most holiday colors, I can wear them when ever I want.
Amy and Julie, the watermelon girls

waiting for fireworks, Jonathan has on his In and Out Burger shirt that Rileigh bought him.

Are dear friends, Sandra, Jim and Eva


Evalyn's like hello.... mine.

No good pics of Evalyn were to be taken so just look at her outfit.

The newly weds, Michael and Kelly Gamboa

4 out of the 7 Gamboa girls ;)

Not our best golf cart of all time, but next year we will be more creative.

She said Grandma this weekend!!

Those eyes, that smile, this is the day she found she could use her belly as a drum.

Evalyn loves tiny books and will chew on them and open them herself but she doesn't want anyone to read them to her. She is going to be a weird as me and hopefully as good as Jonathan.