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.
Thursday, June 30, 2011
Tuesday, June 28, 2011
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!!!!!
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!!!!!
Birthday Week
FYI .... this was written like 2 or 3 days ago... I think.
Personally, I'm having issues with a certain person that I can't even write about here, hopefully in my book I can be a little more truthful about things. I try so hard with this person and they never give back. I know that's not the point and I'm sure there is some great lesson here but right now I'm hurt about it and maybe that is ok for a little while. So you can pray about that if you want. I don't like feeling this way. See, we expect people to act the way that we would act, which doesn't happen. We project ourselves on others and think " well if I were them, I would do this, or at least do this." And it just doesn't work that way.
Physically, I have weird spots on my face that itch, a rash on my arm, cramping, bone pain, headaches, and I'm so tired. It's been really hard to concentrate on anything. I'm afraid I'm going to be making an extra trip to Emory this week.
As usual I remember bits and pieces of a week. I remember getting an awesome massage on Tuesday, going to the a shrink on Monday, working, going to the chiropractor and eating a lot of sweets. There was one point at my grandparents house, I usually work over there, where I started not to feel well and crawled in the bed right in between my grandparents. I thought it was pretty sweet. Oh, on Wed. I took my father and pop out to eat at an awesome local restaurant called Brett's and then we drove about and saw some more of pops brick work and houses they lived in. Pop and I went into one of the houses that he bought and lived in twice, weird huh, and met the nice guy that lives there. I try to buy a coca cola table and chairs off of him.... I think I have watched too much American Pickers this last month.
Evalyn went to my parents house on Thursday and we are picking her up today, Sunday at IKEA. We miss that little book handling, dancing, couch chewing, dog chacing, silly, cute little girl. We are going to try to find a new carseat today that will fit in out little car...... yikes. We really need something bigger. Who knew when I bought that jelly bean car I would get married again and have a baby so soon. God did..... it was a divorce purchase.
AJ, my friend that is getting married and moving away from me, her mom Ann, and I spent a while on Thursday night planning some of her wedding, it's going to be so pretty. Friday was interesting with all the storms. We went to the movies, very rare, and saw Super 8, it was pretty awesome. Kinda like a Stand by Me for todays time. Then we tried a new restaurant called White Tiger and it was so good. We met a couple there that Jonathan had met at the Athens donor drive. She is 2 years post stem cell, so it was great to talk to someone that far out. We had crazy storm and had trouble getting home due to all the fallen trees, it was really a mess and Chloe was freaking out when we got home. Poor puppies. The power was out, so we went to bed. My actual birthday, Sat, we went to a store and bought Evalyn a little gift, more little books and to my friends yardsale. Jonathan did some manly hanging up of stuff and I took a nap. Later my step daughters, Rileigh and Corynne came over and we made dinner together and watched Across the Universe, an awesome Beatles musical. They are some awesome girls!
Personally, I'm having issues with a certain person that I can't even write about here, hopefully in my book I can be a little more truthful about things. I try so hard with this person and they never give back. I know that's not the point and I'm sure there is some great lesson here but right now I'm hurt about it and maybe that is ok for a little while. So you can pray about that if you want. I don't like feeling this way. See, we expect people to act the way that we would act, which doesn't happen. We project ourselves on others and think " well if I were them, I would do this, or at least do this." And it just doesn't work that way.
Physically, I have weird spots on my face that itch, a rash on my arm, cramping, bone pain, headaches, and I'm so tired. It's been really hard to concentrate on anything. I'm afraid I'm going to be making an extra trip to Emory this week.
As usual I remember bits and pieces of a week. I remember getting an awesome massage on Tuesday, going to the a shrink on Monday, working, going to the chiropractor and eating a lot of sweets. There was one point at my grandparents house, I usually work over there, where I started not to feel well and crawled in the bed right in between my grandparents. I thought it was pretty sweet. Oh, on Wed. I took my father and pop out to eat at an awesome local restaurant called Brett's and then we drove about and saw some more of pops brick work and houses they lived in. Pop and I went into one of the houses that he bought and lived in twice, weird huh, and met the nice guy that lives there. I try to buy a coca cola table and chairs off of him.... I think I have watched too much American Pickers this last month.
Evalyn went to my parents house on Thursday and we are picking her up today, Sunday at IKEA. We miss that little book handling, dancing, couch chewing, dog chacing, silly, cute little girl. We are going to try to find a new carseat today that will fit in out little car...... yikes. We really need something bigger. Who knew when I bought that jelly bean car I would get married again and have a baby so soon. God did..... it was a divorce purchase.
AJ, my friend that is getting married and moving away from me, her mom Ann, and I spent a while on Thursday night planning some of her wedding, it's going to be so pretty. Friday was interesting with all the storms. We went to the movies, very rare, and saw Super 8, it was pretty awesome. Kinda like a Stand by Me for todays time. Then we tried a new restaurant called White Tiger and it was so good. We met a couple there that Jonathan had met at the Athens donor drive. She is 2 years post stem cell, so it was great to talk to someone that far out. We had crazy storm and had trouble getting home due to all the fallen trees, it was really a mess and Chloe was freaking out when we got home. Poor puppies. The power was out, so we went to bed. My actual birthday, Sat, we went to a store and bought Evalyn a little gift, more little books and to my friends yardsale. Jonathan did some manly hanging up of stuff and I took a nap. Later my step daughters, Rileigh and Corynne came over and we made dinner together and watched Across the Universe, an awesome Beatles musical. They are some awesome girls!
Saturday, June 25, 2011
Monday, June 20, 2011
Holy Hair, 11 months, and Many Father's Day
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| Check out my new shades!! |
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| The three of us went to Dickeys for Father's Day and kids ate free.....awesome! |
Evalyn turned 11 months this past week and is walking all over the place. She thinks she is so cool and she is of course. We are planning a big celebration on her birthday that includes her birthday, my sisters 25th (the same day) birthday, me being alive still, and Jonathan graduating. It's going to huge, fun, and a party to remember!!! Oooo, I get my picc line out July 1st, so I'll acually be able to swim or wear something that shows that area without Evalyn trying to rip out my vein. One really cute thing that Evalyn is doing right now is carrying around these tiny little books. She loves these books. She is not interested in reading them, just chewing, showing, and carrying. She loves to share, which is good until she tries to share her food with the dogs or tries to share the dogs food. She is a daddy's girl, I'm just not as much fun I guess because of lack of energy maybe and I can't throw her around upside down and stuff. But..... she is always calling me :)
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| words can't even describe how cute this is |
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| Daniel holding on to the car riding his wheele shoes, silly brother |
Have I told you how good the Lord is to us? Well, despite all the pains, meds, and crap we are going through, we have a roof over our head (all though it leaks sometimes), food, family, friends, and a wonderful little girl and puppies. Things are not perfect but would be happy if they were? We'd be like robots I guess.... Just got off the phone with a media person for Be The Match and there will be some exciting publications on the way!! I'm a lucky girl. You're pretty lucky too.
Friday, June 17, 2011
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
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
Wednesday, June 15, 2011
For the newcomers...
Many of you reading this already now most of my story. I have decided to do a short summary though for the Be The Match Run and also for my new readers. If you are a new reader of my blog, or reading through the last few months could be a little overwhelming, so let me give you a synopsis.
I was first diagnosed with Chronic Myeloid Leukemia after my first prenatal blood work when I was newly pregnant with Evalyn. We had just finished telling our family the great news about our new baby when we received a call from my doctor telling us that my white blood cell count was elevated. Coming from a family of nurses and doctors, we knew that only could mean two things: infection or cancer. We went to see a hematologist in Athens, and soon to the Emory Clinic to see what our options were. It looked like they caught it early enough so that I could go through the pregnancy under close guidance, then after delivery I would start taking an oral chemotherapy pill and I would live a long and full life.
The treatment went great for a 3 months and then the oral chemo started to not work and I spiraled into terrible pain. They told me that the medication had stopped working and I had to go to Emory immediately. Little did I know I would be there for 3 weeks and have to start chemotherapy, blood work, platelet infusions, x-rays, cat scans, every test there is under the sun… and then find out that my cancer had turned to Acute Lymphoblastic Leukemia, one of the most dangerous forms of Leukemia. I found out that I would need a stem-cell a transplant from a random donor in order to live long-term. I was in and out of Emory every 5 out of 21 days, for three months, for chemotherapy. My husband, Jonathan, was in school full-time at the University of Georgia, and trying to take care of everyone. Luckily we had a strong support system.
We found a stem-cell donor in February. I am told she is 22 years old and lives overseas. I really hope that we get to meet very soon. The stem cell transplant itself was not a big deal, but the total-body radiation and the last doses of chemo literally killed my immune system to make room for the new stem-cells. It has been a long and painful road but I know that because of a person who donated through Be the Match, my life has been saved and I will be able to see my little girl grow up.
Please considers donating, volunteering, or participating with Be the Match. You can save a life!
Monday, June 13, 2011
Hello,
I'm sure some of you have heard me talk about the be the match race. I'm really excited about it because a lot of people of are training just for this race and getting into shape! Don't worry, you can walk too. I'm going to do to the 1 mile walk with Evalyn. I'm trying to get as many people on my team as possible. It's call "run those stem cells out!!". I would love for some local cross country teams to run for this cause also. I believe that teams have lower registration fees. Please free to pass this on!! If you can't participate consider making a donation under my team. This organization saved my life!
We are also hoping that I have will have some more media opportunities and don't forget, you can always volunteer at the race. I will put up a printable flyer as soon as I figure it all out!
Tuesday, June 7, 2011
Evalyn turned 10 months .... like 3 weeks ago.
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| 10 months old... Daddy's little baseball fan! |
Hey, I was pretty under the weather and busy with trying to work, sleep, or plan the party so I'm way behind! It was supposed to be a surprise to go to the Rome Braves game but I just can't keep surprises for anything because everything takes so much energy. We met the Browder's there and my Mom and Dad came to help. Evalyn did a good job but was ready to go by the 6th inning. It was pretty chilly but better than being too hot. I did have to go get one shot of whiskey to warm myself or I was have froze. No kidding. Sometimes you just have too. They had the the best, well pretty good BBQ. I think Evalyn really hated that the lawn was slanted. She didn't understand how she can get her balance at home but not there.Afterwards, I told my Dad " I needed a half and half bananna/choc shake fro stake and shake STAT!! I was still on a lot of steriods then, but I wish I had one right now..... yummmmmm.
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| Her new kitchen...early b day present... she loves it! |
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!
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!
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