Time Flies when your having......

                   Fun? I'm sure that is very true, but it also floes when your drugged up or just sleep all day. I didn't even get my computer out at the hospital. I was in a weired state of " just let me sleep or die". They did every test in the world and could not figure our what caused the fevers. They know what I don't have. I'm still really bummed that I have that mutation, I'm mean I already had 2, the last one is the the bummer. I'm trying to keep my chin up, just going though the stages again I guess. One thing is for sure is God has allow people far and wide to continue to bless. Evalyn will not run naked, my head will not be cold, Jonathan will not die of low loses of gummie bears. :)
              I'm missing small group tonight and probably yoga this week, I want to try and start back on thing next week, but getting down the hallway without wanting to go back to sleep. Sleeping with Wallace.......well it's heaven. Sleeping on my temperpedic with Wallace... I could tell you because it would cause you to sin with  envy. Soon I hope to have enough energy to blog more and do more of everything. I've lost my charger to my phone for the moment and about 6 more things. I would say that I feel about 70 today. I compared my systems to my poppa when he came by so we decided to up it to 80 years old.

            Keep Jonathan in your prayers, he has such a tremendous weight on him and he is doing a great job. I love you hubby!

Well the good new is that I DON't have a brain tumor

Enjoys nature like her mom and big sis Corynne.

Few pics you may see of me ... so get an eye full.... wait thats a stomach. 

She loves her little outside treasures.

She was either looking for my phone or found a new place for the acorns. 

                             
               As I was laying in the most annoying sounding machine in the world for 30 min ( jonathan and sean, I know you are thinking of dumb and drummer),  I was able to ponder about what if it has spread to brain, not that it still couldn't. I kinda came to the conclusion that if that was the case, I would go with the flow and at anytime that I may be faced with dealth, I will try to die with some dignity and not a hole in my head, although my granny says we should be as humane to humans as we are to animals. That thought process gave me some peace today. I will not lose my dignity though and do not feel bad for that. God said that was ok too. He has lead me to several people already. I gotta hold on to the fact that my own pain helps others.
                I met a lady who's sister is dying, they were coming to take her to hospice. She has such a rare cancer that here is only 8 documented cases in the world. I met her the next day and she said she would like to listen to me sing, in her own way, she can't talk. After I sang some worship songs for her, I was able to lead her through the sinner's prayer. Not sure if she said it in her heart or is already a child of God. Thank goodness we watched that awesome movie with Robert Devell "The Apostle".  It reminded me again about witnessing to other even though it may be tough. She had some tears running down her cheeks and she seemed to be happy. I played for another guy, and he requested for classic rock, so I did some songs for him and it seemed to cheer him up.

           
       I'm sure that you all realize that this has been a very difficult few days. Evalyn has been so depressed that sometimes she won't play, and just lays on the floor. So sad. Jonathan is taking off two days from work, Grandma Judy is helping out one day, and my brother and Father are helping on Wednesday. Mom will have Evalyn again from Thursday to maybe Saturday... depends if I get out of here early or not.
      The only time I have really about lost it in here was last night, after 4 other med errors that day, when I had my 5th night migraine in a row and the PA was suppose to get the IV pain meds in place for middle of the night and it didn't get done. I made it until 6 am to call Dr. Khoury, he said that he was surprised I waited that long. I told him that I will not be so nice next time. Either way, the team has to get it together and realize that I advocate for myself, know my meds, know when I take them, and don't have to wear this damn arm band if I don't want to. I also refused a prego test.... hello???? A complication beside the migraines is my blood sugar level due to the high doses of steroids and I have already had 3 shots today. Please pray that I don't get mouth sores, this is new chemo for me, so the side effects are unknown. The time of chemo is unknown. Heck, I don't even know if they have the orders.
      I'm about to be flagged again by the dietary department for sending food back. Don't worry, I am eating. I made my own salad and tomato sandwich today. I've requested muscadines from a friend in Athens, keeping my figures crossed, and have lots of snacks and people bringing me good food. I've had great visitors including my hubby, sister, brother ( who is one of the few people that I'm truly glad to see when I wake up), He sat in here listening to me snore for 10 min before mom got here.
       What's today? Oh yeah, Sunday, he he, I called my mom thinking it was monday and she was on her way to work at 6am, then later I labeled some of my food with a date in May. Wow. I saw mom yesterday and maybe someone else... I'm sleep deprived beyond doubt. Grandma Judy came to see me... she just can't stay still, she will be driving to athens and taking care of Evalyn all day on Tuesday.  I did miss this movable bed, thats the next temperpedic bed purchase when I'm rich. I also had a wonderful visit with Evalyn , Jonathan, Anna, and her boy friend Charlie. They were able to help out last night so jonathan could watch the game at Daniels house and came to help Jonathan on the drive down. Evalyn was and is very interested in picking up acorns, sticks, and leaves, so we know how an outside basket for her treasures that stays outside until she decides to stop eating tasting them. Jonathan's cousins, that I had not met in person, come to see me. I gave them a baby potty, it's vintage and super cute.
      The next few day are really going to determine the plan for my treatment. We are still waiting on the labs, possible new donor cells for those "booster" shots I may can get, and if all else fails, another transplant... that is not what the Dr. wants nor I. But I will have some more rules... taking a step back. He said that he will let me know how far back when I'm discharged and my status. I'm in blast crisis again but there is still 20% left of the donor cells in my bones. Cancer is weird... if it kills you, it kills itself, seems like it would want to be more of host for a long period of time. Since I have been here, I have told about 6 emory employees that about 'Be the Match' and how easy it is to be donor.
       I have plenty to do, with my 12 hobbies, so don't be disappointed that I don't have an awesome view, I like low light and I think this room is very quite. I think the view make the visitors better, like I'm going to stand at the window and be like "oh well, there is the outside world, that I can't go in"  No thanks, I'll just recreate my little reality here. Crap, forgot to get people sign the guestbook, don't forget when you come!!!! I have my Dad and a fellow ALL surviver coming tomorrow and on Wednesday, Danielle, her mom, and my my cousin Andy will be coming. Jonathan will come again on Thursday, but I'm not sure if I will see Evalyn... again depends on my counts.

Sister Anna and boyfriend Charles.. he does dishes, but they ate my cake.... bad move.

               Anyone willing to fix some homemade for Jonathan would be helpful, even if I get to come home this week it's going to rough with Emory appointments, transfusions, more labs, etc. He's not going to be able to take off next week unless it is an emergency. Please continue to keep our family in your prayers. I'm convinced that watching someone you love go through this is as hard as going through it, well almost.They are helpless a lot of the time, I can at least pull the cancer card. Good new is, my hair should not fall out yet, bad news is that my leg hair looks like it needs a weed-whacker.

Really, is this nasty bruise on my body? ughhhh. 

Just when My pill box was looking Drab.

             
      Yea, be positive, keep your chin up, God is in control, but that is not how I feel right now, and neither would you. Not that I don't appreciate your kind words and that you care :) Pretty much knew yesterday when I decided to go have some labs drawn here in Athens that the cancer was back. It was great to see my friends at GA Cancer and have then see Evalyn. They confirmed that today at Emory. Thankfully my husband was able to get off work to watch Evalyn, my brother Daniel took me part of the way to Emory and we met up with Andy, my cousin, then we met my sister at the appointment who took my scrips to the pharmacy, then Andy met back up with Daniel to take me home. Whew! Takes a village to raise a child, my ass, it takes my whole family to get me to the doc and watch the baby. I had some more labs completed at Emory today. One of the labs will indicate if I have a certain genetic mutation where the oral chemo will not be of assistance. The next step after that is getting more donor cells and doing something like a "booster" one time a month, and then there are clinical trails, more chemo, more transplants, more meds, so at least I'm not backed into the wall. There are options. I'm sure someone at Emory today was told that they can't do anything else for them and they have such and such to live. I was not given a prognosis, however, because basically I'm a lab rat and on the breaking ground of new science. They can't give me what hasn't had enough people my age with ALL plus PH positve, post transplant, now relapsed, female that I am. I cried some in the doctors office when I told Dr. Khoury I was scared. He is such a wonderful doctor, I'm so lucky to have him and the other compassionate staff at Emory. He said that this may be lap one of six and to strap on my seatbelt. Is this a Lebanese saying, I'll have to ask him. I stopped one med, reduced one, and added 4 new ones in one day. You don't even want to know the side effects, but one of them, Sprycel (oral chemo), I had a lot of trouble with when I was on it pre-transplant. I didn't ask a lot of questions that I could have today.... it was just all overwhelming.... and I try to keep some composer for the people around me.  Why? I have no idea.
           On Friday, I will have more labs completed and a possible LP to test my spinal fluid to make sure that the cancer has not spread to my spinal cord and brain, which is one of the favorite places for leukemia cells to hide. I'm not sure what all this means right now in relationship to how my life is right now. Do I have to resort back to rules I had 6 months ago? I'm scared to ask. I was just feeling like I was getting in the flow of my "new normal", nothing will ever be "normal" again. But my new normal consists of me exercising by going to dance, yoga class, walking, all without a mask, volunteering with kids music 1x per month, sleeping with my  dog, taking care of my little girl, Evalyn going to play dates, me helping to take care of my grandparents more, cooking more, cleaning more.....you get the idea. I will know more details over the next week or so, in the mean time, I'm just going to try and go about in the "newest normal" I know and pray that I have the strength to so do. God have mercy.

Medical Update 8/28/11

                   

                   I had three appointments last week and all seemed to go well. My OB is working with a reproductive specialist in Atlanta on my case since going through menopause at the age of 31 is not normal and won't be treated the same as someone older than me. Right now, I'm off of all hormones, and we will be doing a blood test soon that will let us know exactly what type of replacement hormones I need. We are waiting to see if my insurance will pay for it, but it is such an exact test that we'd rather come up with the money if we can so we don't have to guess and then change the meds, then guess... etc. I've been extremely tired lately and they are not sure if it is because of the lack of hormones or that new medication I started, probably a mix of both. Plus, I've probably been pushing myself a little hard trying to meet my standards of what a mother and house wife should be able to get done in a day, while still trying to make time for myself, and create small jobs on the side.... whew...  It seems by Sat or Sun I just crash and sleep most of the day. Anyway, my doctor feels that once I have that test and start the medication I should feel better all around. I'm a Guinea pig with all this so I'm sure it will be interesting at least. I hope to carry another child one day and found out that there is some financial assistance for people that need assistance after cancer. If I decided that it's best for me not to carry a child due to my health, then we may consider a surrogate, hopefully a family member would volunteer. I'd had always hoped to do that for someone else one day. I think it is so sweet.
               The medications are still making feel like crap. I get sick to my stomach often and sometimes don't eat very much (I think it evens out). I can tell when I take the exjade at night, about 30 min later my vision is a little blurred, tummy is icky, and I just feel weird. I've also had a lot of trouble sleeping and still wake up with night sweats or freezing. My doctor wants to do a sleep study on me after I'm off the steroids. He said that the it's interesting the amount of dreaming that I do, how much of them I remember, yet I wake up so often and don't sleep a lot. Boy, when they drive into this brain there is no telling what they are going to find. Maybe they will find out that I use 11% instead of 10% of my brain.  I found out my thyroid levels were a little low and and we are going to keep an eye on it. This runs in my family and it bothers me that there is not a way, or that they know of, to prevent thyroid issues. The radiation increase the chances, which is why it is happening earlier. Please pray for God's hand in all of this. I believe that if he can cure me of cancer he can cure me of the the other things as well. If not, pray that God continues to give the the grace to deal with these types of things while seeking him on a daily basis. Not your will but mine Lord. Sometimes without the thorn in your side, you might forget to seek him, aye? Or not seek out and help others.  That is why I keep reading the verse I have up right, over and over.

I get up and I went down again...

            After today, meaning Sat, I hope that I have grown new bone marrow in my toes or somewhere, because nothing else productive happened. The night before I went with my cousins out to eat and to a jewelry fashion show and drove home pretty late but wouldn't have thought it would have put me in bed most of the day. I even took it easy on Thursday and Friday morning knowing that I had to drive and would be up late. I missed the free dance class that I wanted to go to today and didn't do any of the craft painting I wanted to get completed while Evalyn was at Grandma's. You know I hate to waste time. Jonathan said that he kissed me bye when he left to get Evalyn and I didn't wake up or move. I'm the lightest sleeper in the world and would normally wake up if someone touched a door knob.
            Right now, it's 2:30am, just kept waking up I guess since I was in the bed all day. I didn't even have energy or the humor to write my new blog " Fat chick with a Mohawk". I hope to have more energy tomorrow, we will see, and if I don't maybe I'm working on growing new bone marrow. Now I'm going to watch episode 30 of The Andy Griffith Show. I'm waiting for Happy Days to get added on Netflix... they should take requests.

It's a new life.... and I'm feeling good

Birds flying high
You know how I feel
Sun in the sky
You know how I feel
Reeds driftin' on by
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Fish in the sea
You know how I feel
River running free
You know how I feel
Blossom in the tree
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Dragonfly out in the sun you know what I mean, don't you know
Butterflies all havin' fun you know what I mean
Sleep in peace when the day is done, that's what I mean
And this old world is a new world
And a bold world
For me
Fooor me

Stars when you shine
You know how I feel
Scent of the pine
You know how I feel
Yeah freedom is mine
And I know how I feel
It's a new dawn
It's a new day
It's a new life
hu
It's a new dawn
It's a new day
It's a new life

It's a new dawn
It's a new day
It's a new life
It's a new life
For me

And I'm feeling good

       I love that song. Not sure if I like the Nina Simone version better or the Michael Buble, but either way, "feeling good" is a great song. Hmmm.... Muse does a cool rock'in version that I just found. It's so awesome when you take a leap of faith and are obedient to what God wants even when it may not make sense in the worlds eyes, how God will start to open other doors. Just in the last few days, I have been given a scholarship to Full Bloom so that Evalyn and I can go to all the group classes for free, I have had a cousin call just to see how I was doing and is volunteering to come up and visit and help out for a day, my aunt and uncle seem open to coming up every once in while to sit so that we can have a date, my Dad and Faye are going to start sitting for a couple hours on Wed and Pop and I are going to do our grocery shopping together. He's going to push the cart and I'm the "runner." Hee hee. I have been given 3 singing opprotunities: I'm leading the children's music group next Thursday at Full bloom, I'm singing at the Mama Baby fashion show Sept. 3rd, and I'm waiting to here about me singing the National Anthem at the Be the Match run on Sept. 24th. It's that step of faith, not knowing what is on the other side, not being in control. Man, we are control freaks aren't we? Not that I believe God just wants us to sit away and let life happen to our idle selves. I watched Evalyn trying to figure out her new outside chair. She doesn't have the trust or understand yet to just look at the chair, turn around, and sit down. She has to look at it, climb in almost standing, then sit down. This can get kinda dangerous. Sometimes we just need to sit down in God's chair he gave us or we are going to fall off the chair, scrap our knee, and get dirt in our hair.

Evalyn is always the star of any party. 

               WARNING  SOAP BOX: Ha, if only our consequences as adults were so simple. Finances are still an issues and things will be tight till Jonathan gets a better paying job, or I get better enough to start working again. This is mostly because of insurance issues, aka health care, let's not go there. Ok, I'll go there, but you don't have to. Let's just say we fall in the middle class preexisting condition crack where if I did not have the option for cobra, or Jonathan didn't have a job, I would die because no insurance would pick me up. We make JUST over the limit for a family for me to get medicaid insurance. So when we do the math, someone making less than us actually ends up taking home more than us because we have to pay so much for insurance. So if I magically get another kid or Jonathan get laid off and get's unemployment, or gets a pay cu,t half of our money would not go to getting the care I need and we would come out ahead. BS. No wonder there are people that can't get off the system. I'm thankful for what insurance I can get right now, even though it is expensive.... this new medication is over $13,000 for a 90 supply. That's just one of my meds.

AJ and Ben. I threw a wedding shower for them with the help of  some ladies at the farm. 

         I'm already feeling better not being at the computer for hours at a time. My bones are not aching as much and I'm having as many cramps. I'm still working my butt off on house stuff but "moving" is so much better than just sitting. Still have to get permission to vacuum and clean fish, but I'm going to pick that bone with Dr. Khoury on Friday. I was hoping to go Kayaking on Sat with my sis and bro, but I still have this rash on my legs so I'm thinking that he is going to say no. If it is a no, then we are going to an indoor rock climbing place and out to lunch... coupon books in hand of course. I got kinda freaked out at church the other day, the girl at the nursery had wrappings around her legs. She said that she has a brier cut, some kind of sand tick got in there, had babies in her blood stream, and she has big blood blisters from the infection. Bless her heart, they gave her 50 mg of predisone and nothing to help her sleep or calm her. Some doctors can be so cruel. I usually don't push drugs but I let her know what has helped me and she doesn't have to feel like a chicken with her head cut off.
            We tried a new church on Sunday. It was pretty good, they gave us a spiritual gifts test and I scored the highest in Creativity and Leadership. There is a lot of them. I'm make a copy and get my cuz to help make a printable link if you want to do it. The sermon was good and explained the difference between talents and gifts. The pastor mentioned that the church always burns people out by not letting them serve where their true gift is. For example, if someone is a teacher, the first thing a church my ask them to do, or they may think it is all they can do, is teach. Now why would anyone want to teach all week and then teach on Sunday. Not me. I had someone the other day tell me how great I would be at event planning and could have a good paying job doing it. Well,  I do like event planning, but that usually always leads to working on the weekends, most weekends. I don't think I could handle psycho brides. I think I'll just use that talent for friends and family and put on some fun parties. I'm working on a "Double Dare" birthday party idea in my head now..... if you don't know what that is..... Google.  I liked the music because it was the old hymns I grew up with, nice and simple, no cheese. I do think there should be a 2 comment limit per greeter, about coming back. Not sure why that gets on my nerves, but good greif, my cheeks start to hurt from fake smiling. We didn't get up and leave, so that is a good sign. My grandparents acually went to that church for quite a while. Next week, we are trying Athens church, they are starting a 12 pm service...... HOW  COOL IS THAT? This is lead by Andy Stanley and I've watch some of his stuff online and I really like him..... now the music.... we shall see.
                     This week I have to start that new medication, Exjade, that I have been dreading. I'm so glad that my mom is coming up for a few days! Our friend Marlin is coming up also, he makes us steaks and brings me good cookies. I will be going to Emory on Friday for level checks and hope that they continue to reduce my predisone and other medications. Hopefully, my snoring will get better soon, poor Jonathan is not sleeping well because of it, and I'm getting tired of him waking me up. My nexk is all swollen still so hopefully that will go down soon! Please Lord!

Feeling 80%,
Love, Heather
               

Medical Update-8/2/11- Just going to face the wind

                         Evalyn playing with a toy at Jill and Steve's house, She likes the wind more than the balls.
             It's been pretty rough, I'm not going to lie. There have been absolutely wonderful moments in the last few days that I will cherish and by God's grace I was able to enjoy despite the pain and sickness, such as the video above from small group tonight. Evalyn sitting in her chair entertaining herself with her books when I was sick and had no one here. The look on her Daddy and her face when they have not seen each other all day.
            I will refer to last nights sleep as "the screams". First, I woke Jonathan up screaming my head off with a horrible cramp in my leg. The cramps and pain in my bones and joints are getting worse this week probably due to reduction in steroids. So it will be worth it in the end. I had one cramp in my hand today that lasted 10 min.  Later that night, Jonathan woke up yelling about a spider or a bug that landed on him and was crawling my way. I think he would have knocked me off the bed if he could have to save me from the creature. So after a couple adrenaline rushes, lets just say there was not a lot of sleep. I got up and piddled, not to mark my territory, around for 45 min and then when back to bed, where Wallace was laying upside down on his back.
            I woke up with the shits. Yep I said it. Or wrote it. You all think it. Do not think that at certain points today I was not afraid of having to change clothes. It has happened to me before. I changed my plans this morning so I could stay close to the toilet.  If I could set up a poll on here, I would, and you could anonymously check if you have pooped in your pants after the age of 10. I just picked a number. My head hurt, my toes hurt, bones hurt, everything hurt, and then on top of that I was thinking  I might have to go to Emory since stomach issues are one of the first signs of GHVD, which can happen as the steroids are reduced. I still have some serious hospital anxiety. I really don't want to go back, ever. I took some meds and luckily Evalyn took a pretty good nap so that I could lay down. Then I called my Mommy.
              I did start to feel better later, after 3 more pills, and Corynne came over and helped with Evalyn and we were also able to work on some art projects. Tomorrow, I have a CT of my sinuses and a dermatologist appt. Please pray they figure out what the heck these spots are on my leg. Hmm, hand cramp, guess I'm done for now.

Love,
Heather

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. 

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!

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…."

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. 

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 100^th 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.  

Medical Update7-6

             I'm not sure if there is an area of my body that does not hurt, ache, is swollen, or throbbing right now. Reasons? God only knows. Right now, I have a piggy foot, a piggy belly, a piggy neck that makes more snore and my throat hurt ( due to the steroids ), bone pain in both knees that Dr. K says is common in the younger patients, bone pain in my back, a weird earache, and I'm sure there is something else but you get the point.... oh yea, not sleeping but at least I got some paper work done in the middle of the night.
      Friday is my 100th day! So that is super exciting. I guess it doesn't mean that I'm still not going to have issues. I actually have an appointment that day at Emory and want to do something to let everyone know that it is my 100th day. I could get a 100th balloon and have my own private parade, write it on my forehead, carry a sign, I don't know what to do yet. I'm suppose to go to a monastery for a weekend retreat and hope that all this crap doesn't keep me from going.
        So for now it's short and sweet cause it's been a difficult week so far. Thank goodness my mom can can't stay away from Evalyn for more than two weeks and came to help out! By the way, she said Grandma :)

Medical Update 6/30

So..... they don't know what the rash is.... you know what they do when they don't know? Give you steroids  antibiotic, and some anti itch medication that makes you sleepy, except you can't sleep because the steroids are causing the oppisite sides of your brain to go in 5 different directions. Let's just say I'm refusing to purchase anything via internet without my husband doing it for me. This stuff will make you crazy in the middle of the night.
The rash doesn't feel better but being on the meds is horrible.
     Tomorrow we go to Emory once again but for something good.... I'm getting my picc line out. YEP, that's right hopefully I have shot up the last time this evening and can quit wasting tons of plastic. Dr. Khoury wants me to stop by for a quick (and free) visit just so he can "look me over".
     Maybe tomorrow I will actually be able to share some personal news and pictures, good and bad, but for now 5 am comes early and I have to take something to try and help me sleep.... then I'll be drinking caffeine to help me wake up. Where does it end people? Do I sound like I'm on steroids, for those that know this blog well, know I could ramble all night.

Medical Update 6-28

       As I said in the last post.... I'm having a bad rash... and it's getting worse. I finally broke down and called emory today and it only took 3 hours to get in touch with someone. We didn't know if we were going or staying or trying to find a sitter or what. So, I'm going into tomorrow, and Friday. An itchy rash is awful, you can't do anything really because it's all you can think about. It can drive you to drink. No kidding. A rash can mean that the GVHD or the CMV is coming back so please pray that is not the case but pray that I'm not allergic to something I really like, like chocolate, or my husband. ha ha
             I'm also having some stomach issues, headache, bone pain, and a tiredness I have never know. I guess making new bone marrow takes a lot of work. Today I have been in bed most the day and just felt like I could get up. I'm going to try and work some now, getting fired at this point would kill me, literally. They have been wonderful to me..... Gosh  I'm itching so baddddddd!!!!!

Emory update June 17th

Hello Everyone,
                  Dr. K was late today.... very unusual. He said that I'm doing wonderful and will see me again on July 1st. That will also be the day that I get my PICC line out!!!! That means I can go swimming, take a normal shower, and not have to remember to flush my lines everyday. By that point, I hope to be off 2 more medications. No drops today but I did have a reduction. I have been having a lot of headaches, cramps, and been very tired sometimes. I was able to invite Dr. K to be part of the running team along with some other employees that I have relationships with.
                    It's still very hard not to be able to take care of Evalyn, sometimes and I worry that if Jonathan gets a job soon I won't be able to handle it. Quite a few of my sitters are not able to sit anymore and we can't afford to hire someone. I guess that is why we are a peace right now that he has not found a job and can concentration on studying for the CPA exam and taking care of us. It's clear that I'm not ready to be a full-time mom or employee. I have good days with work and then I have days where I have such bad cramps or headaches I can't do anything but go lay down. Then I have really good times when I'm able to work, play, do an art project, etc. It's kinda up and down.
                     I had to cancel practicing singing with someone today because I over did it yesterday and had to go home a rest. Plus I didn't sleep last night because I kept snoring and waking Jonathan up. I don't want to be one of those couples that don't sleep together when we get older so I'm hoping it's the medication because it makes my mouth dry.
                     All in all I'm super lucky to be doing this well around 80 days. The Lord is good and I'm thankful!!!

Heather

Great News!

Hello,
Great News... I'm now on the every 2 weeks with Emory if everything goes well. I'm still having medication changes that are making me feel like crap but it's all relative. I don't have to put one of the creams on anymore, yeaaaaaa! My aunt Sharon took me home that day and one of the staff at the EKG place gave me the crab necklece to go with my earrings from my favorite site,www.pinupgirlclothing.com, cool retro stuff. It was so thoughtful of her. I still need to be careful, I find myself getting a little apathetic, like " I'm ok, if I forgot my mask" etc. Now I'm working on get stuff together my team for the be the match run in Sept. I'm just doing the one mile run of course, but not running. So that info should be up soon!
thanks for your continued prayers!

Chillin out

Hello,
The fevers have still come and gone but I'm no longer spending 18 hours in bed. My mom is here now thank goodness. I didn't tell her how back it was last week because they were on vacation and I didn't want them to have to come back. Jonathan's mom was with Jonathan's sister, so besides some sitters here and there we were on our on. It was a blessing Jonathan didn't get that job or mom and dad would have to come back for sure. I was able to get up at a decent time today and plan on going to my office down the street. My hands have started to shake, not sure what that is about. Good news I forgot to tell you about it is that my CMV level, the virus that can come back, is almost down to 0, and I may be able to get off the medication soon. I also don't have to put one of my creams! Woo Hoo. This fri at my appointment I'm going to put the envelope again and see if I can go on a two day trip to a Monastery for a Yoga retreat at the end of June. I better wear the Betty Page wig, or maybe Marilyn. Maybe I'm paint something on my head. My hair is starting to grow back some and this may sound weird to you but I like being bald. It seems like with this menopause stuff going on I'm getting some hair in weird place. I will sell body parts to get electrolysis before I have weird hair at 30.
Love,
Heather

Quick Updates 5-22

       Well, we never heard back from the Job so we are trusting that it is God's will for Jonathan to stick about and take care of me and Evalyn some more. I'm defiantly not recovered enough be take care of Evalyn all day byself or even with a sitter for 4 hours.
         On Friday, at Emory, Dr. Khoury said that I 'm doing great. I lowered the predizone (steroids) and the anti-rejection medication. Yesterday, I started to run a fever but not high enough to come in the hospital. I called alway to let them know and that I know it was the GVHD because the rash started coming back as soon as I lowered the medication. I don't really want to go all the way to Emory for IV antibiotics and steroids. I'm just so tired. So I'm trying to get that set up just in case. This morning I reached the magic number but only once, so I'm holding out.

Medical Update 5-18

Hi Everyone,
                    I really need you to pray about this painful side effect that I guess is from the lowering of the predizone. I'm have debilitating cramps in my hands, calves, and feet worse than anything that I have experience like that. My hands will literally look like I have cerebral palsy until the cramp passes. This is making it difficult to sleep, take care of Evalyn, drive, and to work. And I really need to catch up on work.
                    Energy wise I have been ok but I'm still exhausted from this whirlwind of this past weekend. I pushed myself this weekend since the transplant and it ws a good thing, but there is a price for everthing! My rash is looking a lot better but my feet are always swollen like they were when I was pregnant. I call them "piggy feet". Thank goodness I bought some choco shoes for myself. They wrap around 360 degrees and I can change them based on how my feet change. I love them and they have a life time warrenty.
                      I went to my local oncologist this morning to get my levels checked but I won't get the results till tomorrow. In the meantime, I'm taking some Calcium, crying, rubbing aspercream on myself, and trying to find some magnesium spray someone told me my help.

All in all it's not the worse thing I have been through, but it is not fun.

Love, Heather