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, April 30, 2011

Emory update 4-29

I wanted to give you all an update from yesterday. By the way, those of you that are just interested in parts of the blog, for instance, you just have to see pics of Evalyn, don't forget on the right hand side there is an index.... just a a reminder.

MEDICAL UPDATE:  I'm going to bullet again :)
1. liver is normal, but they are still keeping off one pill for now
2. I have to increase my BP medication, one more pill
3. I have to start a new antibiotic so I dont get pneumonia, but just on Sat and Sun, weird
4. Cough is there, but better, inhairler changed to PRN!
5. Still on the same about of seroids, yuck
6. Been taking the sleeping pills I was order to take,  sleeping better, follow the rules heather
7. An icky part is that he has insisted that I use the rash cream 3 times a day before he will take me down on the steroids. I hate this cream. How can it not get on Evalyn... I don't know... I'm still trying to figure it out
8. Started the new study drug.... didn't get sick..... but it could be the sugar pill. It's a secret.
9. I had mentioned abormal bleeding before and that I do not beleive in taking hormones because when I do I have to be on a anti depresents, and yada yada.  Well, at the beginning of the week, they doubled it because it got so bad. Well, it's making me weeping. Not depressed, I'll just start crying. I could cry at a dog food commercial or just thinking of how much I love someone. He asked me to make an appt with the women doc an maybe there is something else going on. Please pray for me on that. I don't want to be infertile due to the radiation and I don't want to deal with all this other stuff either. Sorry to be so blunt, but you can tune out at any time.
10.  Knees are hurting, I need to take it a little easier, hard for me to do, but I'm trying today.
11. I had one scare yesterday. I went to do my EKG for the study drug, last thing on the list. My heart rate was crazy and the doc came in and said that usually if someone's is that high, they can't leave the hospital. Crap, I don't have my pillow, I thought. The issue is always communication. They are just sent down with orders to do one and don't know anything about the person. So I explained everything I'm on and why this is up and this is down but he still had to talk to Dr. K. I have spent hours waiting for the main man, as wonderful as he it.  Soon, I was out the door. Close call. What happens to people that don't know what is going on....it seems sad to me. I hope they have family members to help.
12. Best part for last, at this time I only have 1 Emory appt next week, god willing. I do have to schedule some appointments here in athens . Less gas for us, well my mom :)


UPDATE on Janet: I went to ICU to see Janet yesterday and followed my grandfathers rule that sometimes it's better to ask forgiveness than premission, ha ha. Don't worry, I was suited up. She was not concious, and this is acually the frist time I had seen her. We were usually not on the floor at the same times. I was able to pray for her. She was moving all around seeming uncomfortable but when I touched her forehead it's like the Lord calmed her. I said the prayer and got the heck out :)

I was also able to walk across the street to Children's healthcare to visit one of my favorite nurses that just transferred. She is a doll, I just love her. And her name is DORI. How cool!

My mom left to go back to Cville and my aunt Sherrie wasn't going to pick me up till 3pm. So I had some time to myself. I felt like such a big girl, ha ha. I have a rolly lap top bag now that makes it so easy to carry my snacks and toys. I met a man named John in the infusion center who was very nice and one lady just starting speaking blessings over me and it was so powerful, I forgot to get her name. The staff I see all the time are great, I love them, they call me VIP now. Hee Hee. I'm going to right up some good stuff about them and pass it on to the big wig. Wigs, ha ha ha.
           


   

Advocating for yourself!!!

I have not wrote a blog in a while about hospital protocols and advocating for yourselves.... so the next section is for those coming behind me in the future to help make there experience more smooth. Read on if you want but don't feel you have to :) This is a pick and choose blog. 



                I know I have said this before but let me reiterate that after the transplant things are far from over and you are shuffled though to the next teams and Emory protocols and lack of communication all over again. So just as you get your stuff together and get the team to start communicating with YOU, it starts all over. Thats ok, many years of advocating for my people on my caseload has prepared me to advocate for myself in a respectful way, most of the time. 
                 The example that I would like to give is that before the transplant, you have a transplant coordinator that is all up in your grill to get you through all the tests to get to the transplant. Then at the transplant, that person falls off the face of the earth and everything they did has to be done or redone by someone else who doesn't know you and doesn't it a different way. At this time, I have to say AGAIN, Emory is the best hospital around, I'm lucky to be treated there but I want to help those of you that are going to go through this because some of these things are the only thing you will have any control over in your life, and everyone has to have a little to stay sane. Some of this is funding because they really need to have coordinators that stay with you from beginning to end, kinda what I did for a job, and have 30 or so people. Well, when I win, or play, the lotto, I'm giving money for that reason only. 
         After the transplant is when you have to start coming the the clinic 2-3 a week. These appointments are sketcy. There is a plaza level lab in purgatory, I like to call it, they they have to use if they are drawing form a port, picc, or doing another special test. It's slow, slow, cramed, everyone is in a bad mood. Once my voice is back, I'm going to pop out my guitar and go at it....           Now, on the 2nd floor there is a nice quite lab, you get in quick and fast. The issue is that they only draw from the arm there. Hey, I have been in so much pain and picked, etc, that an arm pick is nothing. So when I have the choice, I advocate for myself to be at that lab and choose to get it taken from my arm. This is better also because you are not around the sick people down stairs that are coming to clinic as a walk in do to fevers, etc.  Sometimes you just have to go downstairs, but always go up and talk to Ramirez on the 2nd floor and ask him to ask the nurse if they can change it. It took me two weeks but I know have my nurse on board, the scheduling team, and myself that I always go to the 2nd floor lab unless otherwise noted, and I want to know why.
                Last week was a prime example of lack of communication, again lack of funding, They were trying to get me to go downstairs to get 19 tubes of blood from my picc for the research drug I was going to start on last Friday. However, everyone knew, Dr. K, nurse, the research coordinator, by Thurday, that I was not going to start the drug on Friday. No one bothered to call me. So we thought we were going to be at Emory all day, I had a ride set up to get back to Emory (mom goes home on fridays from Emory), and they were trying to take my blood that they didn't need. Well, we got that straighten out real quick, got my quick labs on the second floor, and thank God my cousin Andy, love you!, got out of bed to come and get me!
               This week went smoother but it still took some advocating on my behalf. On Wed, they said that I was going to start the study drug on Friday (all day thing). Dr. K asked the research coordinator to give me a road map asap because I wanted to know what what going to happen and when I would need a ride. Now, they can never guarantee anything, but I'll I ask for is common knowledge so I can be in charge of my medical care because it is my body. I emailed the RC (research coordinator) first thing on Thursday morning, never heard back all day. I finally called my nurse an expressed again that I wanted us to be on the same page and wanted to forward her the email. Instead, she found the RC, and got her on the road. Now this is were the some of the sweet talking came in, (more flies with honey) I said a lot of I's, very important. They are so busy,  over worked, they are there still 7 every night.  I calmly explained to her that it causes me more anxiety for me, my caregivers, my drivers, when we have no idea what is going on. That I have very little control over my life and I have to be able to advocate for myself. There was also the issues about eating. I have to eat about every 2.5 to 3 hours , small meals, at this time. With the amount of meds that I'm on if my tummy gets empty, I get sick.  I had to fast for so long before and after the medication. Now if the team is not on board with times, I could have ended up going 6 hours without eating instead of 4. This actually happened to me back in Nov in the hospital, I didn't get to eat all day because of a procedure that someone didn't do early enough. I'll have to find that blog and put a link here. The team got on board. She gave me a road map, and I bet I saw her five times throughout the day. She seemed to be very sorry, even though I continued to tell her that she is doing a great job and I understand. The day was long, but went smoothly. It was worth fighting for and so are you! 
           

Friday, April 29, 2011

Lord could you hurry up the Dawn?

        Romans 5:3-5        More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

                     The storms the other night hit my home town of Cartersville, GA, and many others of course. My family is ok but I know there are many family without homes right now and so many lives were lost the other night. In the mist of everything you or I may be going through, we still have to remember that we could be taken off this earth in a heart beat. Yea, maybe that is a blessing sometimes, the quick and easy approach, hey I have thought about it believe me, but God's plan is so huge we have no idea of the big picture.... or the dimensions of the other big pictures are little brains are too small to comprehend. I do believe in the string theory, but I don't think my chemo brain can explain how that works right now.
                 Anyway, I have probably said this before since I have become a repeater at this time in my life. I don't know why bad things happen. I don't know why God allows them to happen. What I do know if that God is God. We live in a fallen word, people an planet. People's decisions have a change reaction on everyone, righteous or unrighteous. We are the clay, not not the molders, but God uses us to help mold others to a more likeness of him. This is where faith comes in and man that is a hard one. Faith that God has our best in mind, that he loves us even when we are in pain. It has been wonderful the days that that he has helped me raise beyond my horrible cancer to touch others, to be able to feel the pain of others, to cry for a fellow patient, to hurt for Japan and now the people that are devastated by these storms. Wonderful to hurt, I say. Yea, empathy, love,  and compassion are what get our assess moving. It we do anything out of any other reason it's selfish and not of the Lord, even though he will still use it.

Mark 12:41-44



Updates for Prayer Request:
1. Janet, my friend, is still on life support. She keeps going from stable to unstable.
2. My poor babysitters club has really had a bad week. I have two sick, one's friend was in a horse accident, another fell and broke....another bone, and one can't sleep and is having bad back problems.... that is just this week!
3. Jonathan is in the mists of study for finals that start at the end of this week. We are going to try to hide it, there is one class that could keep him from graduating at this point. We have peace about it though, it he have to take one more class after everything he has been doing this semester no one in there right mind would look down their nose at him. He has been amazing.... full load with very hard hard classes that he was told it was insane to take, taking care of Evalyn and me, me in and out of the hospital, then gone for 3 weeks! Holy cow!! The other prayer request is a Job, not just any job,the right job for him and our family.
4. Our family is still dealing a lot with the passing of my mom's mother, Nanny, mostly her children. These things take time.
5. I would love if you all would pray for each other, I know you don't know each other, but to pray a blessing over the people that have helped us so much and continue to do so. I never would have thought in a million years there would have been this kind of out pouring of love on our family. I can't wait to see what God has in store for us as I recover and our cup runs over!
6. I will be at Emory....ummmm forever tomorrow and I'm suppose to start a new trail anti rejection drug. After I take it I have to wait so long to do this test, then another test, yada yada and we have to leave.... oh at like 5:30.... one reason that I'm up right now. Could take that last sleeping pill, might not make it!  Just pray,  I don't have any weird reactions, that I have patience for the slow lack of communication, and instead of getting ill at some person who has no waiting room etiquette skill, may I find someone to cheer up, or somewhere to sleep.

I hope you have a wonderful and enjoy this weather!

Thursday, April 28, 2011

Hello,
            I know that July 16th is still far off but I wanted to get the word out because some are already planning summer and it might take me a while to do invitations and I wanted to get you as excited as I am!!!
            On July 16th we are going to have a big party here in Athens were we live. The Celebration will be 3, well kinda 4 reasons in one. 1. Evalyn will be turning a year old 2. a brief baby dedication prayer 3. Lord willing we will be celebrating the success of the stem cell transplant and mainly that at that point I will be through the most critical 100 days!, and 4. My sis jen is turning 25, which according to research her brain in now fully developed and she can rent a car (love ya sis)
             This will be a day event, and people can pick and choose what they want to do and when ever you gotta go, etc. Just to get you excited. We will have access to the air condition club house, shaded picnic tables, lake, and pool!

7am -11am (and later too if you want)  Fishing Contest on the stocked lake. We will have a pontoon boat to take you around, you can fish off the sides, you can even bring you own boat and fish all day if ya want! Who ever has the biggest and then the most (for kids and adults), will get a prize! We will have people helping the kids fish.

11am: 12:30
Lunch- Cover dish plus BBQ or fish
Short baby dedication with a prayer
Next- Celebration- 3 different cakes (anyone bake?)
A couple games for the olders kids, and one quick game for the adults

12:30 and on...  Swimming, Fishing, volley ball,  Karaoke and board games in the club house, or take a nap!

Between Jonathan and I we have 5 sides of the family and all our friends here at the farm. It should be a great turn out and the first time  I will be able to be around a large crowd, yeaaa.

Sounds fun huh?? So save the date. You all have helped us make it through all this and I want you to have some fun!

Invitations to come!

Love,
Heather and Jonathan
and Evalyn Rose

Wednesday, April 27, 2011

Don't ever Brag about sleep.

Hello Everyone
          After Sunday night, there has been no sleep, therefore, no productivity at work, and no rest for my body. I'm just on so many meds and last night woke up with terrible stomach pains. Otherwise, the last two days have been great. I'm on lots of steroids, so cleaning out rooms have gone well, ha ha. But really, I can't be up 24/7 and my body heal. So today at my clinic appointment I was ordered to take 2 sleeping pills, and if I wake up I have to take another one. That's just crazy.
           Everything else checked out well today at Emory besides adding another med, and doubling another one. My BP and liver profiles are more normal now so they are going to start me on the study drug on Friday. I will have to be at Emory from 7:00 to 3 or 4. Once I take the first med via infusion, I have to wait so long to get lab work again, then have to do another EKG.

Time to take those meds. Hopefully, Goodnight.

Tuesday, April 26, 2011

I was Sleeping!

Hi Everyone,
              I just want to first let you know I'm giving God the praise and glory for everything wonderful that has happened in the last couple of days since I'm about to say I a lot. As for a couple things I'm really running my head into, I'm still working on those...
                 This weekend, Jonathan, Evalyn, and I were alone and we had some time with family and played a lot. I was able to use my steriod energy to get some things done... yea yea.... you shouldn't be doing this and that. Well, going through and organizing my closet and getting rid of stuff from the laundry room I have been wanting to do since 09, is not on the list! We also organized the huge amount of medication I have acquired and will be on and off. It looks good, I'm riding the wave baby, and moving to the next room, who knows what will happen when I come down! I was able to take care of Evalyn more and more this weekend, not that I didn't have a few total crashes after, but sometimes I just crash. That's why I still need help. Jonathan did some safety things for Evalyn around the house, how helpful!
                 On Sunday night, it was the first night that I have slept more than 4 hours at one time in at least 4 weeks. It was wonderful. Jonathan even had to wake me up and Evalyn had slept 15 min later than normal. Jonathan got up with her and I went to my Poppa Bill's to start my first day back at work. I say "day", but it was a very short one. They fed me some good food of course which is wonderful because at this time I have to eat every 2.5 to 3 hours. I think it's the steroids burning my hard put down calories however, I'm sure I could come up with a way to blame the extinction of the dinosaurs on steroids at this point. I'm not sure the magic behind the night. I cried really hard that night about some stuff, didn't even try to go to bed till 12 am, and took my meds late. Obviously, I'm not sleeping now, I got up at 4 am, to eat, and now I'm up writing to you my friends.
So this Monday at work, it was so funny... I sent an email out that I was reporting to work and some other ones out to some fellow workers... I get an email back that everyone is off today! Ha ha ha ha. I was able to do some paper work and I'm trying to be patience with myself. It takes me 3 times as long to do anything I was doing before and 5 times more energy. I didn't get as much done as I wanted to but I can't beat myself up about it. Hopefully today will be even better. I was also able to make or "fix" some potato soup today by myself. I'm not suppose to do dishes yet but I did cook something.... baby steps right?
            Some other wonderful things that happen today is that my Grandparents let me borrow the wonderful lady that helps take care of them and she did some work in the garden and going to do some more this week. My friend Pat went to Lowes for me and picked out some more flowers, and my Poppa and someone else is going to figure out how to hang Evalyn's swing up!! It's so wonderful for people to be willing to help do the things I dearly wish I could do for myself. I was able to do some neighborly visits today which felt nice. A lady, Elise, let me borrow an exercise bike I have been meaning to call but I just stopped by and thanked her. Later I ended giving her a ride back to her cart when she got too tried to finish her walk. She is 90 years old and is still go, go, going. I want to be like that too! My dear neighbor, Fred, broke his arm this week in a fall to go fishing, they have sent so many sweet cards to me and are just the sweetest people ever. I was able to make a card, which I love to do, but now know, that I am indeed not ready to be around glue.
           I can't give any details at this point but we have a major issue going with a family member right now that has to be addressed and dealt with and it is so sad, concerning, and we don't need anymore of that right now. Just general prayers at this point and direction from the Lord on choosing words and being calm. My friend Janet is doing a little better over the weekend and they hope to get her off life support soon!
Now... should I work, clean, try to sleep, or eat again??????????

Sunday, April 24, 2011

Pics from this Week



We have had a great but tiring weekend. First time with just the three of us in a while. I was able to do more for myself and Evalyn which was great! 
Grandma Judy came to watch Evalyn.

Grandma Kim is coming every week to help!

At Poppa Bill's, giving Granny scares around the table.

Hanging with Poppa Bruce and Fay. 

Evalyn is loving getting into cabinets, this is the only one we will let her in. 

Very happy indeed. 

We had a very nice dinner at Poppa's Sat. Evalyn sat in her high chair and ate big people food for an hour!

We had "fake Easter" and dressed up like we could go somewhere!!

It's impossible to get everyone to look.

She wasn't in the mood for pics much today. She didn't understand a dress.

She did love the Easter basket!

.....and eating the plastic eggs.

Awwwww.

Now back to chewing. 

Saturday, April 23, 2011

Heavy Heart for Janet Pope and Emory Update

Hello Everyone,
Yesterday at Emory went pretty well all things considering. I was suppose to start the trial anti rejection drug but they still don't want me too due to some of the issues going on. Basically yesterday these things happened:
1. the anti rejection drug I'm on has been making my BP high since the transplant and now I'm on BP medication. I looked at Dr. K and said ,"I'm on BP meds at 30?" He said not to look at it that way, I just had a transplant...
2. My liver profile is off.....stopped another med for now.
3. Cough was still terrible so he gave me a new med on top of the inhaler. It seems to be helping. My tummy might get flabby again, hee hee.
4. Sleeping. I'm not sure if I know what that is anymore. I have not really slept in weeks. The cough is getting somewhat better so I was able to rest but these steroids are still making my mind race and I'm not sure they make a drug that can handle my mind right now.
5. GVHD- I'm still having some of the rash and really want it to go away so I get off some of the meds.

So yesterday ended up being good in the sense that I didn't have to spend 8 hours at Emory like I thought I would have to and luckily my cuz Andy was able to jump out of bed and take to Athens early so my Mom could go home for a much needed break.

I have a lot more to say about a lot of fun things that happened today but right now my heart is so the lady I mentioned before, Janet Pope. Right now, she is on life support at Emory. She had her transplant 2 months before me, then got pneumonia, and now has a lot of other things going on. She has two kids. Besides just concerned about her and her family, it really shakes me up about how serious of this is, and how careful I really need to be. Please pray for her and her family.

Friday, April 22, 2011

JESUS

Good Friday,

        Thank you Jesus for what you did for us, what you are doing, and everything yet to come. May we strive to be more like you each day through good times and bad times remembering that we are being molded and along the way there are others that need a hand up and their tears wipes. Keep us from passing up opportunities that spread your good news even when we ourselves are tired and oppressed. Give us joy to share with others and take the planks out of us eyes to our own joy. Amen

May God Bless you and your Family

Thursday, April 21, 2011

Emory Check Up and those less fortunate

Good Morning!
         I actually feel better than I have felt in a really, really long time at the moment. This is because I'm on an amount of steroids that no one should be allowed to take. I was hoping we would we be done with them so I could get the crash over and start to start over trying to just be normal. Dr. K said that we are not finished with them yet. He gave me a scrip for a 100 and said that we would be off and on them. Well, I've learned to ride the roller coaster with this crap, except most the stuff I would normal do, I can do. Steroids make me want to break the rules, but breaking them this time could kill me. So, I going to force myself to wear the blue mask and take a walk today and still try to find an exercise bike to borrow. I'm also going to do some cleaning out of the laundry room and organize some things, so another part of the house can be organized and so on. That's kinda breaking the rules because of dust, but I'm going to wear a mask and use dust wipes. Yea, Yea, what do you want me to do, I have to do somethings or I'm going to lose it.
          I had a appointment yesterday and boy did we wait forever and ever. We did meet a couple that lives in Cartersville and knows some of the same people we know. They were there with their son and he has throat cancer and they were expecting some big news today. The poor mom was so nervous. We exchanged numbers and I hope my Mom is going to give her a call so they can talk. I think Mom needs to talk to another mom also. My appointment went well. I still have the rash, the cough, and ummm abnormal bleeding (girl stuff), and I have a weird strip on my head but that is no big deal. I left with 4 new medications, some to replace, some new. It is so weird how much time I have to spend sorting medications, putting on creams, taking care of my line, nose sprays, inhalers, taking my temp etc. Should I really have 4 different creams at age 30 that are not beauty creams at all? I don't think so. Beauty creams..... Ha. Hair Spray..... Ha ha. Make up..... forget about it. I have to go back to Emory Friday... crap that is tomorrow...all day. I'm starting some new drug and they to watch me and do an EKG a little while after, do labs, see the Dr. again.
           I know two people that are not doing to well with their transplant. One is named Jan, she is in an induced coma right now while they are trying to figure out what is wrong with her lungs. She has two children and is around my age. I believe she had her BMT back in Jan or Feb, I forget. Another girl I know, D, not sure if I can share her name yet, is on day 14 or 15. She has been in a lot of pain but is hopefully getting better, I hope to hear back from her soon. My friend Amanda seems to be doing great and I hope to visit her tomorrow while I'm stuck at Emory. She doesn't have to have a BMT but is finishing up her chemo soon. I also spoke to Olan this morning. If you have been reading the blogs, your remember that I met him and his wife, Marilyn, back in Nov. She was waiting for a BMT. She passed away back in early March. Olan said that he is doing ok and is excited that I invited him to come fishing at our lake.
            On the home front, we continue to be blessed with what we need when we need it. Jonathan passed his test but has been so busy on other stuff we have barely been able to see each other.Hopefully this weekend we will be able to spend some time together. Mom has been a huge help driving and taking care of everyone. Evalyn continues to amaze me with how much she is growing up and really want to just walk. We are having to set limits and she is not liking no, but rules are rules and by God we are sticking to them... even when I'm tired, sick, etc (I'm talking to myself).

Tuesday, April 19, 2011

Home Sweet Home and a close Hospital call

9 months old!


Hey Everyone,
                   Obviously I'm a little behind on blogging, and a lot of other stuff, story of my life. Nah, my story is a lot bigger than that. I just haven't had a lot of extra energy to do much on the computer. My appointment on Friday went great and we were able to come home to Athens. It was wonderful to have our family together, including the puppies. Wallace acted a little funny like he wasn't sure if it was me or a clone of me. Maybe I smell a little different. Chloe said, "hey mom, glad your back, I have filed my reports for you to review." Evalyn seemed a little confused between Mom and I this weekend. Evalyn turned 9 months old this weekend! We put an dress on her she will probably never wear again, but hey we got some pictures. Evalyn didn't feel well due to teething and an upset tummy and she was very fussy. Let's just say we went through a pack of diapers in one day. I can't change diapers rights now, so Mom and Jonathan had the joy. We have flowers blooming thanks to people that have come over to work in the yard.
                       I was really tired and had to lay down a lot but that is to be expected. I also still have this cough which is really making my body even more tired, but my abs are looking pretty good! My voice is still very weak and I'm sorry I have not been able to call and talk to more people. I glad not to have to be back on the oral chemo yet. I think one of the most disappointing things that I didn't know before leaving the hospital, is that when I go outside I to wear one of the  the thick blue masks, for a long time. It's not just the pollen, but there is a lot of fungus in the air that make for a terrible strain of pneumonia which is still very fatal for the immune compromised.   That makes walking for exercise a lot less enjoyable. Maybe it will get better once I'm not coughing. I need to find a small exercise bike to borrow to put in the back room so I can still get some exercise the days I can't do the mask. Anyone know someone with one sitting around?
Mom, Grandma, and Evalyn went on a walk, I almost had to call someone to come get me.


No, he hasn't gotten thrown up on yet. 

                         We had a scare yesterday. I woke up with chills and sweats and checked my temp and it was 101.6. I have to call Emory for a list of reasons and a fever ove 100.5 is at the top. So I called at 4am and the doctor on call said to come in and I would be admitted to 8E. Then, once she found out I was in Athens, she said that I could wait to come to the clinic at 8:00am. Mom and I weren't sleeping good before that happen anyway and we left at 5:30am. I had to call my friend AJ at 4:30 in the morning to see if she could come over at 7am so Jonathan could get ready for school. He had a huge test yesterday and a career fair. Jonathan got in touch with his mom to come up for the day. We are calling this a Code Red. Of course, I had to pack some stuff in case I got admitted. We got there at 7:30 and they took half my weight in blood and did a nasal swab. I don't know if you have ever had something stuck so far up your nose it felt like it touched your brain but you really should try it sometime. It's like pulling out twenty nose hairs at once but worse. Then you feel extremely uneven as if they should do the other side, but you wouldn't dare to ask for that again. This was my third one this month and this lady was not as gentle. Then she told me I had a "something something" which meant my sinuses were not straight. Thanks lady. After all that, I felt like I should pee in something and was kinda disappointed that they didn't want a urine sample. Weird. We were called back fairly quickly to the ice box infusion center and thank goodness we were because I was about to tell this guy that watching a movie on a laptop (in another language, without headphones) in a waiting room of sick cancer patients was rude as hell. One of these days Alice!
               I had a very nice male nurse named Jeremy and he started me right away on IV antibiotics and said that he had paged Dr. Khoury and his nurse to let them know I was there. The following is to the tune of "the rain came down and the flood came up" So the fever went up and the pages  went out, the fever went up and the pages went out, oh for about 5 hours. Thank goodness I could stay back in the infusion center in the comfy recliners and I didn't have to wear my mask which gives me all kinds of coughing fits. My mom was so worried and I slipped into doze, after hot then cold flash, to coughing fit. They finally came on their lunch break. Dr. K said that he had thought Graft verses Host Disease on Fri and did mention that to me. It can be very serious but there are a lot of mild causes. Everyone that has a transplant has some of it. I honestly haven't read that much about it mostly because I can't concentrate enough to read. It has taken me two days to write this blog and it's getting completed now because I'm on steroids. A lot. It was wonderful to hear that I was not going to get admitted. My counts are also looking good for this week. After some IV steroids and directions to take some at home, we were off. Man I still felt awful. While I was waiting for my mom to come pick me up, I saw a girl, well a young lady on the bench outside on the phone. She was wiping some tears off her face but wasn't saying anything. She was a patient because I saw a bracelet on her arm. I felt the Lord tell me to give her my information and man I really didn't feel like it. I wasn't looking like a cancer surviver and looked way worse than her. So I got over it and went outside and told her that if she every wanted to talk to someone that she could call or email me. She said thank you. I didn't get her name.
I think she is just going to go straight to walking....

                 Last night I was so tired Jonathan had to help me to bed. I have had night sweats before but I don't think I have ever had to change everything I had on, turn on lights, wake up my husband, and generally freak out a little. Today, I feel tired but drugged and this stupid cough is not better. I am better than yesterday, so that is good. Changed my first diaper in a while today, with gloves on, and tickled Evalyn. We also went next door to eat some lunch with Jim and Eva. Mom cleaned the bathroom for more. She cleans like I do so that was great because these steroids are about to make me break rules. I wanted to go to small group tonight  but with having to wear a mask and having the cough, I decided I should stay home. Mom and Jonathan are going to go and my friend AJ is going to come help out.
               We really need a lot of prayer in the employment area. I'm having to take some medical leave because I haven't been able to keep up with work like I though I could. I'm planning to start back on Monday but obviously my plans are not what is happening. Jonathan is looking for a job and really needs some connections but it seems to be who you know now days. If it wasn't for such wonderful family and friends that has help us out financially, babysitting, food, housework, etc etc etc, well...... I guess there is so point of starting sentences out with "if" at this point. Please pray for peace for all of us. Jonathan wants so much to provide for our family, even though he is by taking care of pretty much everything, and the Lord knows the desires of his heart. No one is world is sweeter than Jonathan and should have a good job that he enjoys. He puts his heart into everything.
                  Well that's all for now. I would say no news is good news, but that is not the truth. If something happens again like yesterday, I'll try to get Jonathan to update the blog with a short one so you all are not left wondering. I'm glad you wonder because it means you care. Thank you for caring.
I didn't proof read this.....and I don't care.
This girl looks like her Daddy most of the time. Good thing he is cute. 

Thursday, April 14, 2011

I'm Out!!!

Hey Everyone!
                 I did get to leave the hospital yesterday and it was wonderful  and overwhelming at the same time. It was such a weird feeling leaving after being couped up in that room. And yes, there this is a lot of fear of getting sick and having to go back, but they said all these feelings are normal. Ha, what is normal anymore. I could barely stop crying as I was leaving the floor and then we got into the car and I started crying again! I'm at my aunt Sheri's right now for a couple days but hope to be back home Friday evening or Sat morning.
                    Seeing Evalyn after not seeing her for two weeks was amazing. It almost felt like a daze. She looked at me a smiled and made a happy sound, came to me, and gave me a hug and kiss. It was wonderful. I can't believe all the stuff she has learned how to do in just 3 weeks! Jonathan took her back to Athens that evening so I could rest and go to my appointment on Friday. I can't wait to be home. My mom has already been amazing with helping me take care of myself and making sure that I eat. Let me tell ya, today, I ate a lot! My docs will be so proud. I am having a little rash thing going on and still coughing but hopefully those won't be big issues. I see Dr. K tomorrow, which always makes me feel better. One of my medications give me the worse taste in my mouth, it's awful, there has to be something I can do about that. Energy is still low, but I'm going on walks and trying to do more and more to get stronger.
                       Right before we left the hospital and man stopped by, he posted on the last blog, and was very encouraging. He said that he has seen my name on my door and recognized it from the Fox story and then looked me up on the web. I was so out of this this round in the hospital, it didn't really get to say how much my nurses and nurse tech did for me and how amazing they are. There was also a lady that would volunteer and play her harp in the hallway, it was so peaceful to listen to her play. There were also volunteers that would stop by to say hey and one day a sweet lady walked the floor with me. I heard that some of my friends did some yardwork for us and someone else sent us some money. We are truly blessed. I know there will be a time that God will call upon me to do the same for others and I hope to do so with gladness in my heart.
Leaving the hospital 



My uncle Tony with his two grandchildren
                    
 I will let you know how my appointment goes tomorrow!

Monday, April 11, 2011

The Masked visitors- Guess who?



I missed getting pics of some of you!!!










Day +11 and +12 Docs say I'm doing great!

                         Hello everyone! My counts continue to come up! Today my WBC's are 1.9 and all I had to get was some IV magnesium this morning. I felt great yesterday and was able to have two sets of visitors. My aunt Lisa made me a beautiful little artificial flower basket, I just love it! She is also wanting to buy my little girl some clothes! My uncle John and talked about music some it it was a great visit. My mother and father in law came to see me too and brought some food and other stuff I needed. It was great to be able to have some energy to work on some crafts and I even got some work completed. My throat and the cough are still giving me some issues and I coughed all night long, so of course I felt pretty bad at first. Thank goodness I still have access to some pain medications because I needed it this morning. I could have taken something for a cough last night, but it can just delay the healing process. Hopefully, I can get a good nap this afternoon. Oh my, they are still looking at Wed for me to leave here.... it's great news.... this last part, since feeling a little better, is starting to fly by. Little nervous about leaving, it's like you become two different people and I know I'm going to have to be taken care of some and watch Evalyn being taken care of may be difficult for me.
                    I do not feel that I have been able to be "a blessing " to as many people here like I was my last extended stay. Mostly because I have not been able to talk, sing, visit with anyone, and felt like crap. Of course, God has been working on me and that is probably more important right now. I'm suppose to get out on Wed if everything is still looking good tomorrow. I will get to see my baby girl and hubby, no puppies yet though. It's still amazes me how all this works and how God has given man the tools needed to figure out all the neat medical procedures that saves lives. Next up... some masked visitors.... I think I missed three of ya!

Saturday, April 9, 2011

Day +10 God heard our cries and Found me a Window

                      Praise the Lord, things are starting to look up. Luckily, I didn't have to go completely to the other side of hell before God snatched me from the fire.  My white count is now measurable meaning it is .4 today. Today was the first day in a while that I have not had to have platelets or blood. The means that the stem cells have set up housekeeping and are getting to work to make new bone marrow.  Just a little jump in my white count is helping the sores in my mouth and the doctor said that I have been doing a really good job with the oral care. I have about 5 different things I'm using and a lot of time on my hands. I was able to go out of the room for the first time today and my brother walked a half mile with me the my mom walked the other half. Later this evening, I was able to walk another half mile and then rode the bike for 10 min. I even wanted to shop today, online, so I did and it was fun. There is an art project that I have been thinking about but ended up leaving at home because I knew I was going to feel so bad. Well today, I actually found myself wanting to do something so my mom brought the stuff and I'll be able to work on it tomorrow. Doesn't sound like much but I haven't really been able to do anything or have the concentration to do much. I also got some great news today that I may be one of those lucky people that get to go home early.... maybe even Wed or Thurs..... well not home just yet. I'm going to my aunts house to stay a night or two because I have appointments at Emory all day that Friday if I am out.
                         Things that we still have to overcome is this horrible cough that I have going on. They think it is mostly just in my throat at it is really hard to get up and out do to the pain. They gave me some kind of patch to put on that is for nausea, but for me it is helping me to decrease the amount of saliva I was producing and not drool like a dog or keep the suction thing in my mouth, yuck. I also have high blood pressure and swollen feet and ankles. But I do feel a lot better today and hope tomorrow is wonderful.
video
                         On the home front, Evalyn and Jonathan are doing great. Jonathan has a lot of school work to do and at the same time, he is trying to get the house clean for me to come home. The big one is getting the carpet cleaned while the dogs and Evalyn are out of the house, Jonathan attends classes and takes exams, all while my mom is tied up with me. We thought that we had another week, but I'm not complaining. Evalyn is pulling herself up on things now by herself!!! She also picked up some cheerios for the first time and got a few in her mouth. Mom got a cute video, I just have to figure out how to get it on here.  Evalyn had to go to the, wow almost said vet, to the doc this week for a rash, and they weighed her: 19lbs 13 oz!!!!!!!!!!!!!!!  We are going to pass are hand-me-down person..... this I am sad about because of the obvious money savings. I got some pretty good deals on ebay today so that was good :) Evalyn is now able to sit up and even stand up in her crib which is posing a sleeping issue. Not sure how we will work this one out, but I guess it does just like everything else. Bye Bye, cute UGA mobile.
                          Thanks for all your prayers and you support.... soon starts the next phase of warding off GVHD and infections so I don't have to come back for a "tune up." God is with me now and will be with me then. God bless you all!!

Friday, April 8, 2011

DAY +7, +8,+9 I found the Secret Door to Hell

                     The past few days have been the worse and the physicians feel that I have hit the bottom and my counts should start to come up slowly soon. I don't think that there is much more to tell you medical wise that was not in the last blog. Everything has just been worse: new sores in my throat and mouth, new swelling in my feet and ankles, headaches, more medications, blotchy skin, unable to eat anything, and have barley been able to speak. So when I said secret door to hell,  I mean pain wise. I told my Doc there needs to be an extra dip in the scale, He agreed, but thought it may deter others from the process. Probably right.
                      Two mornings in a row, I have been able to ride that bike at least 3 miles had enough energy to visit with a few masked friends and family masksdddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddd            (This is one of my thing that can happen when I start to zone out and leave my finger on the key),  My other favorite is when I startle myself in a weird Elaine Dancing type of movement . I will also catch myself saying something to someone who is not in the room, or worse, not remember what I just thought I said, did I say it or not?  Then I may just fall asleep any ol way.
              Some good things that happened:  they have taken me off isolation but now i'm too tired to go walk today but will probably go tomorrow. They put me on some meds for inflammation in my lungs and throat and I have been able been able to eat a little and even better drink some water.
             ***Visitors*** We are very lucky to have so many people want to come cheer me up in the hospital. Please make sure that you call first because there may already be to many people visiting that day. If you can't get in touch with me, call Jonathan. I may be sleeping, sick, or have lost my voice completely. Before you come, you have to think "Have I been around anyone sick at work, church, dogs, cats, smoke etc, Have I been sneezing, coughing, have or ancvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv others                                                                                                            

Well, I have fallen asleep.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

Monday, April 4, 2011

Day +4 and +5 In the Basement

Hello Everyone. As you can imagine, I'm going through a lot of pain right now and there is not too much else that they can do for it. This is just something I will have to pass through. Now, I have to use a suction tube, think dentist. I have to use it when I have too much saliva and it is too painful to swallow . Gross, huh? I wonder if when Jesus went to hell to get the keys, what all happened during that during those 3 days. Share what you think about that.... I found some materials on it but can't read it.  It is very hard for me to concentrate on anything more than a comment. I'm sitting in bed right now with my laptop and find myself nodding off. I could probably fall asleep most anywhere, except at night in my bed, at the hospital. It is not only the medications but that I have not slept well in many days, I'm weak due to not eating, and that I am in pain.. My parents, Jennifer, and Jonathan came to visit this weekend. When you're stuck in a room, time gets all messed up. Yesterday went by a little faster than today. I really can't believe that it is only 1:30 pm!
Painful sores in my mouth :(

Off to try and sleep some more.
Heather

Saturday, April 2, 2011

Day +3: Smoothies and Meds

(Today's blog is a guest blog... written by Heather's husband, Jonathan)

     Today, I drove up to Emory to see my wife.  She desperately needed a smoothie, which has to be made only of frozen fruit, so I found a Smoothie King near Piedmont Park. Luckily, since I'm cheap and think smoothies are drastically overpriced, I had a buy one get one free coupon and got myself a smoothie too. I'm drinking it as I type... and Heather is drinking hers too. These are the kind of romantic meals we get these days...
     Once again, Heather didn't sleep well last night. She says she was in pain throughout the night... pain in her throat and under her tongue.  Heather's throat is still hurting pretty badly.  Because of all this and because of the mouth sores that are developing, if she didn't have this smoothie, or the Ensure shakes they bring her, she might not want to eat at all.  She's got a low-grade fever, so they are continuing the antibiotics, and she is going to go have a chest x-ray after I leave.
     She is having more bone and muscle pain than before. And what sucks about bone pain is that most painkillers don't really help. And such was the case this morning, when she finally got some pain medicine. And I say "finally" because it took her over an hour to get her nurse when she was in pain this morning. Her nurse was apparently at a "skills fair" and someone else was supposed to cover for her, but didn't end up covering for her.   (I think this is the part in one of those medical dramas [like House or E.R.] where an angry husband goes out and punches the doctor... then the show goes to commercial... then after the commercial the guy is handcuffed by security... but you feel bad for the guy because he was just standing up for his wife. So maybe I shouldn't go punch anybody... but something may need to be said if it happens again.)
    As I type, I count 5 bags on her little medicine pole. (They switched her from getting her meds in pill for to getting them as an IV.)  And she has already gotten blood and platelets today too.  Needless to say, its a rough day. But it isn't anything out of the ordinary, so don't worry. But please do pray... for peace, for pain relief, for clarity of mind, and for whatever else you want to pray for.
    It's hurting for Heather to talk right now, so if you call, she probably won't answer. And if you call twice, she won't answer either... so don't try that tactic.  Just text her if you want her... she'll text you back when she feels up to it.
    Also, she doesn't want any "pop-in" visitors right now. Because of the pain and because it hurts to talk, she wants to limit her visitors for a while. So if you want to come visit, text her and ask her when would be a good time to come by.


Well, I've enjoyed writing for my sweetie. Thank you to everyone for reading. And for praying. And for everything else you have done and are doing for her and our family.

Friday, April 1, 2011

Day +1 and +2

Hello Everyone!  Yesterday and today I've just been trying to wrap my mind around being stuck in this room and figure out how not to lose it. Not sure if I have figured it out, but I think I'm still sane. My test results still came back positive so I'm still stuck in this room. I will get retested on Monday. The team feels that everything is on course and my counts are going way down. I have been feeling ok except for the general weakness, a little stomach sickness, and my mouth and throat feeling weird. Oh you'll like this.... I pooped my pants today. Yep, it was so gross, and I almost started crying. I'm still not sure what happen but it happened fast. So no matter what happened to you today at least you can say you were in control of your bodily functions if nothing else. I know some other people who are reading this that have pooped their pants.... feel free to share your stories here. Yesterday my cuz Andy came to visit and also Mike and Teddy on Jonathan's side of the family. I'm in the process of getting enough pictures together to post a masked visitors blog but Andy got away yesterday. We had some good visits and today my Mom came and stayed for a while ;). I was able to talk the team into letting me use the exercise bike in my room so I could get some type of activity. They agreed and I rode about 3 miles this morning. I was also able to get a little paper work done today. I don't have too much to say today but I know that a lot of people care and want to be updated. I'm very thankful for that. I figured pooping my pants was enough information for one day :).