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, March 31, 2012

Picture Blog 3/31

This is the most famous ad ,    wait that was me before  40 lbs and chemo... enjoyed while it lasted I guess.. just like a coke.

We are at my parents now, I'm super sick to my stomach, on the verge of having to go to the hospital. Right now I'm waiting to see if this stomach medication works in the next hour. Please God, don't have me go there this weekend. So for now, I'm going to put up some pics of fun things we have been able to do over the last couple of weeks. Enjoy

St. Patrick's Day!

Bagpipes were awesome, so were the dancers, and drum lines.I also enjoyed the old cop cars. 

Yes, I did have to talk him into this. I finally scored him some beads, I didn't have to do anything crazy, just ask. 

There were the cutest kids there, I heard one say " This is the best day of my life!"

St. Patrick I presume. 

I was under attack by Kermit. 

Just being silly, and leaving feathers in my wake. 

Ummm..... there was some type of anime convention going  on. 

Rainbow bright... oh how I loved her.



 Coca Cola Museum 
It was great to see a lot of the memorabilia. We have a small collection and I love the vintage bathing suit ads.  






It was really crowded so I had to wear a mask and my legs were already starting to hurt  from the day. I decided the best thing to do was use a wheelchair. It was a pretty good dent in my pride, then we got to skip all the lines outside in the sun and people moved out of my way. I got to tell a few kids that it was a ninja mask. Now the big mistake was after we left, I refused to pay a cab 12 bucks to take me two blocks up hill. I paid for it later. 

Love old bottles! I collected blue ones but may branch out.

In the retro room. That couch was more comfortable than it looks. 




Fun at the Farm 

The beautiful bulbs that Fay  planted last far. 

Noah and Evalyn are becoming friends.


Gorgeous 

Sarah and Noah at the Farm. 

No, I'm not going to look at you, we are about to melt because it is our nap time and we are hungry and we don't have the reason to worry about anything else.


At Emory

I was able to take a break from the room to meet my new nephew , Will. 

My brother Scott came to visit me at the hospital, very sweet.


More Fun with Friends and Family

Emma and Isabella at the library. 

With her Daddy...... she says "Where's Daddy at?"

Learning to not throw the whole fishing pole into  the lake. 


A beautiful evening at the farm.



She loves her Bible and her new Easter book. She will go get them and  act like she is reading them by herself. 



Time at the library with friends. We also have had other friends join us, I just need to get some pics.

Evalyn is getting more comfortable playing with and sitting with the other children. 

This is weird. Random pic from downtown at the Grit.



The 20's Fundraiser

There was not as big a turn out at this fundraiser for Project  Safe  but it was fun to dress up, dance, and  meet people. I meet two other people that knew or had leukemia and was able to give them my information for support. 

The Georgian Hotel is beautiful. We didn't get to try the food but maybe next time. They had at least an  8 piece horn band that was amazing. I watched a couple of videos on 20s dancing and it's so easy.... just a lot of singing arms and kicking legs. I won the dance contest! 20 bucks toward Your Pie.  

Friday, March 30, 2012

Daily Devotional- 3/30- Happy Birthday and Breaking World Records!

Great Blessings today from the Lord and continued gratitude for prayers, encouragement, food, sitters, and financial supported. Today it has been one year since my BMT. (See link for last years blog) http://heatherwarrencape.blogspot.com/2011_03_01_archive.html  and although it has been and still is a rough recovery, I'm was truly blessed to have found a 9.5 match. The BMT was still the best option and still helping me even though it did not end up being a cure for me.
Receiving stem cell is just like getting blood, but more people in the room.



Other great news is that the bone marrow drive in Athens was a great success, we beat the work record for the number of signed ups in a 24 hour period. Here is the link to the Athens News Paper. So many lives will be saved. Some people stayed up for the whole 24 hours, I volunteered for 4 and still recovering, but it was great. There is still a lot of fun raising to do so please go to Kajal's Be the Match Page if you are able to donate some money to this huge drive. It's not cheap to DNA type.   If you still want to sign up and did not get a chance to do so, go to www.bethematch.org   Please continue to pray for Kajal , and others,as she is looking for a match. 

Friends that came out play, most helpful and sounded great!

I did some singing and playing too but I'm really good at "barking" at people.

My little area I set up for donations. Amazing what a bald head and some pictures will do!


I just so grateful for everyone that showed up and can't wait to see what else God is going to do in my life and others. So today's devotional is simple.... be thankful, be giving, bring life to others. 

Tuesday, March 27, 2012

Daily Devotional 2/27

I'm trying to get back into the groove of a routine after losing another week of my life. Still have not written it down but I'll get to it soon enough just like everything else. Didn't have bad bone pain last night but did hurt, I sucked it up till about 4 and finally took one of my low dose pills. Didn't sleep much, too nervous about all this bone stuff and excited about the bone marrow drive I posted about in the last blog.

God has been speaking to me a lot in different ways lately, and not really giving much warning. For example, out of the blue I felt like God wanted  to go to my parents church on Sunday to sing and give my testimony. We may or may not go... depending on what my parents want to do.

Another weird thing that happened last Monday, was that I was out in a consignment shop that I have never been to and I'm looking around and one of my paintings was on the wall... an unfinished big painting. I think I must have given some canvases away that I never that I would finish and thought someone could paint over them. My sister Anna was with me and I told her to watch when we got home and I would find the picture I took of the painting (I paint mostly from pictures) and I was going to get the painting back that it had to be finished. This also kinda confirmed something else I have been praying about: what to do with myself if and when I get over this next hump. I had wanted to go back to school, but we don't need any more loans and I'm advocating for my brother right now and it's nice to do with no job because I can't get into trouble. :). Then I have the art side of me. I make a lot of different crafts mostly just for people's presents and also love to get stuff for free and reuse it, like a shadow box made out of an old drawer, and earring holders out of pieces of an old shelf. Then of course I love my vintage clothing and kitchen items. So I have been thinking of renting a small booth at a consignment shop.

Don't have a verse today, just listening to what he wants me to do. Woo, the night is catching up with me, need coffee and some stretching, then getting the girl up to get ready for the library today! Pray I can get on and off the floor... mainly off.

Monday, March 26, 2012

BE THE MATCH DRIVE for Kajal Patel



Alright, Athens and surrounding peeps, we have a 24 hours BE The Match drive for Kajal. I need you all to spread the word and come out sometime to donate, support, swab your cheek, or hey be on the news, we will have 24 hour covered from the news and radio. I will be playing and singing outside the GA Theater at 8... guitar case open. Please come by and play and sing... cause I can't do it all night, I don't remember enough songs anymore!

Tuesday, March 27 thru Wednesday, March 28
4pm-8pm Omni Fitness Center
8pm-2am: Georgia Theatre
2am-6am: Waffle House (right by Georgia Theatre off of Clayton RD)
6am-10am: Ramsey Center & 7am-10am Omni Fitness
10am-4pm: Tate Center

http://www.bethematchfoundation.org/site/TR?px=1812947&fr_id=1461&pg=personal
http://www.facebook.com/Beaheroforkajal

Medical update 3/26- A bone in fart what?

Hi,
I know that some of you, including family, feel a little bit in the dark about last week in the hospital and what all came out of it and what all happened. To tell you the truth I'm was just as loss for words and as I said before once I put it out here, it's out, it's the truth, and well I guess after 3 sudden nights in the hospital, the death of my beloved blue iPod, and the news, I just had to pretend all was well for a couple of days. That included going to a 20's style fundraiser on Sat., doing a bunch of stuff around the house and outside I had no business doing but it made me feel good, and having company over that brought dinner and eating outside WITHOUT a stupid mask on. Watched Evalyn grow and learn right before my eyes and have everyone talk about how wonderful she is. Well, I have skipped the last two Monday's in my mind, so did Poppa, thinking it was a different day, well Monday hit hard today and I have a lot to deal with and so what if I bought two ferns I had no business touching a Lowe's. I got my Lola turtle back, HA.  So there. THERE.

Whole truth right? I'm literally crying right now because I'm just so overwhelmed at the unknown and just when I think we know what we are going to do, something happens and it changes. After the relapse, we found out that I could get the pontatinib (oral chemo from FDA)  and I was doing great, losing weight, my meds were decreasing, then BAM, rash every where, GVHD in eyes, increase in meds, molting, but still hopeful. We have been playing lab rat to figure out if the rash was GVHD or the oral chemo. Well, it's looking toward more of the oral chemo, which when I have asked well what does it matter if it is oral chemo I have to take it to save my life.... Dr. Khoury... mumbled something about maybe not. WHAT? Then BAM my blood sugar is too high and I have to prick myself and give insulin and we are not sure if this is going away or not.

As soon as I'm about to sit down and literally write myself out a med schedule for myself, Evalyn (iron,probiotics, and floride), the dogs (yogart,dental, and a shot for Chloe once a week), remind Jonathan to take his stuff to increase immune system, and the baby sitting schedules, doctors, exercise, FUN plans, etc etc. ...... I have two of the worse bone nights I have had since radiation and the BMT. Shaking, crying, calling my Poppa at 6 am crying pain. Now, I could have went to the hospital and paid what ever my expensive ER co pay is to get some IV pain meds, but i knew it would be over it at least 5-6 hours and I wanted to keep that money. Not saying I will do the same next time.

Emory calls last Tuesday and says they want me to be admitted for the night to give me some pain relief and sleep and do some tests. Code Red called and everyone pulled together and Evalyn was taken care of... Jonathan missed a lot of work, no pay there, but lots of understand caring people. Mom got off work a day early. Dr. Khoury was out of town for 2 days, that should have given me warning right there. I only took a minimal of stuff, one night right? I didn't get any pain medication till 11:30 that night and I was there at 4pm. Luckily I was not in that much pain, relatively speaking, or believe me, I would have. It was nice to see some of my friends on 6E, great staff there, and they knew me as soon as they saw the smiley face on my yellow mask. Mom and I tried to watch a movie, I kept falling asleep, she said it was dumb, so we turned it off. As you can read in the last blog, it was a lot of waiting and a lot of me taking up a room that someone probably needed.

I finally got the results of the MRI and it was what I thought they were test for. I have Avascular Necrosis. Now, I don't know if that is what I also have in my feet, hands, arms, and back when I have bone pain because in 3 days I only had 2 tests and a lot of take out food. AN is a process where the part of the bone involved ina joint loses adequate blood flow, causing the area of bone to break down. No wonder I couldn't get up off the floor without a major production. The doctor on call at Emory said there was not a way to back track, but there would be things to do to slow the process down. Joint replacement would probably be needed in the future. I'm not going to believe the whole no back track thing, There has to be something. What caused this? They say long term steroid use. I say steroids, plus radiation, plus chemo, plus tons of meds, and cancer ......SUCK.

At that point, we were waiting on what I was going to do to control the pain. We just kept waiting... my wonderful nurse Carmen was trying to get me out of there. A friend Matt showed up and we decided to break out..... I mean we broke out.... off campus to a pizza place, called everybodys. I bet you have never seen an admitted patient with an IV still in the arm, drinking a bear at lunch?? Well that was my breaking point. We got back to the room and my brother Scott who has autism came to visit me, no warning. He was fine but I had to pack up and keep getting him to lower his voice about sodas and choc easter egg bunnies because the walls are pretty thin and I was about to blow a gadget that they have not gotten a plan together. Good god, you gave me a BMT people can you not control this horrible pain that hits me in the middle of the night? Give me a shot to give myself, I'm already giving myself at least 3 a day with the insulin They offered time extended release morphine to take everyday. I took the scrip, but not planning on using it at this point. I'm taking enough everyday. My step dad Frank came to pick me up and I went home to a loving family and my baby girl asking ME to put her to bed..... then I tried to forget the whole thing. Now it's Monday, now I have to figure out what  the next step is, well, I guess we, there are a lot of you all in this with me. By the grace of God I made it to yoga this morning, only because I know that It will help me. As far as the other exercises, I'm not sure if I can do those yet or not. There is always hope.

Friday, March 23, 2012

Medical update 3/23 - Don't know nothin'

Today, last year, I was starting my first day of radiation in prep for the BMT. WOW, a year since the worse thing you can put in your body was killing me. Drah.
It was dreadful.

Staying still that long.... more dreadful. 


I have not blogged in a few days because I was in a lot of pain, mostly in the middle of the night and was getting exhausted. I didn't know anything more so I didn't have much to say. You can always get in touch with Jonathan if you have not heard from me in a while. I was admitted on Tuesday thinking that I would be here one night, and do some tests that night or the next morning. I brought some stuff to do but mainly I wish I had brought my guitar.  Plus, being on this pain medication, I can hardly concentrate long enough to write anything. There has been a lot of self-advocacy since I have gotton here. I think I haven't spent as much time here on this side of  the hospital as my VIP status seems to be working better in clinic now, and my vision keeps coming and going.    There I go nodding off again.

Tues night, I was just so frustrated about being in such a  big hurry to get here for nothing. I got here and didn't get any pain meds til almost midnight. On Wed, I didn't get any tests and luckily, my sister-in-law came and brought lunch and I was able to meet baby Will. My mom came also came and brought food and we tried to watch a movie, but it just wasn't worth it and I kept falling asleep. Later my cousin came and brought Locos and was so yummy, I had Jennifer bring me the same thing today. I really realizes later that my cousin Andy is one of my best friends. AWWWW. Somehow you keep alluding my camera..... In the mean time, my Mom, Daniel, Dad, Faye, and sister Anna and the watch dogs are holding down the fort.
My sister was worried about me and got her days of work switched. She is so sweet. 


I finially had an MRI today (Thurs). They really are awful. I feel bad that I didn't realize how uncomfortable they can be for someone my age, let alone my poor grandmother. I was there for 3 hours and someone finally said ok, that was enought for that day and we probably get the hips done today.  There was no help button... wish someone had me on tape yelling, "is anyone there" "my feet are cold!!" "you forgot to turn the music back on", none of which was heard. By the time I got out of there, I was a fragile wreck. At least I get to listen to music off of pandora, not my Ipod though, because I killed it in sweet tea :). I didn't get to see Dr. K today and that was a little disappointing. I know that he is making the decisions though.
We snuck out of the hospital for a treat. Needed some veggies. 



Today, I get more blood work, more MRI's, then who knows.... I don't know if I'm going home today. I do know that I'm not eating this food. Other goals will be to fill out a ton of paperwork to see if we can qualify for  more assistane with medication and copays to offset things like needing a small suv and sadly a new roof. One of my fav uncles is in ICU right now so keep him in your prayers. He said that he is not in a lot of pain, which is great. I will never forget the times as an early adult he would slip me some extra money because he knew I was broke. Today my mom, Evalyn, and I are suppose to be spending time doing some stuff together... maybe I can talk her into staying longer. I miss my mom but glad that she is able to come be with her granddaughter.
At least I match. 

Now, it's time to get some coffee, have a devotional, maybe some yoga, work on the family calendar, figure out our babysitter schedule, try to sell things on ebay, but... I won't be changing diapers, which doesn't sound so bad, I miss my little girl....  work on some fun blogs, like Evalyn stuff and our St Pat's day, and try to find something decent to eat. Maybe, go to the musaem if I get bored since it is free for patients, anyone want to come on down?

Monday, March 19, 2012

Daily Devotional 3/19- The more we get together

Seems hard to concentrate this morning and even not fall asleep right now. I got up up 6:30 am to get some things done, trying to esp a routine with all my meds, appts, and activities and from 7-8 I still feel rushed. It's already 7:40 and usually I start my devotion by 7:30. I already took some of my lunck meds though so I don't have to worry about those as much, since I already forgot twice to check my BS before lunch last week. 


As you know, we are still looking for a church for Sunday mornings or Sunday night. Jonathan and I are happy with just attending a small group once a week and doing our own devotional times and sometimes together. I truly believe that a small group of 6-8 people that you can be totally honest wiith, grow with, and truely have relationships with than just showing up on Sunday morning, feeling good about it and waving bye, see ya next week. Not that everyone does that at all. We know God wants us to get in church for Evalyn at this point and one day use mine and Jonathans's gifts of music and leadership. We try to try a new church every other week, We skipped a few weeks there but plan on going some this Sunday. The church that I have in mind is not too small where we will like we have to start jumping in right away, because we just have too much on our plate, but not big enough that we feel like we could just watch the podcast and get the same thing out of it. I also feel that where the church money goes is very important to our family. We found this really small church and we loved that every 7th Sunday instead of church they went somewhere to volunteer their time and talents. Do you know how many people are sitting in nursing homes with no one to visit them, or a child that is at the children's shelter waiting to go to the next foster home? Breaks my heart. Right now I know that my calling is to spread the word about Be the Match and will be helping with setting up the fundraising team this week. 




The verse from Daily Fast Fuel
Acts 2:42.
They devoted themselves to the apostles teaching, and to fellowship, to the breaking of bread and to prayer.

Today, I'm suppose to go to yoga this morning, Spend some time with my sister, I think she is going to drive me to Madison, and we will have lunch, then a counseling  appt with Jonathan and someone he has been seeing for a while. He's one of the most sane people in the family and he is one of the only ones that see someone often.  Then back to home base and come up with a good excuse not to make dinner tonight. I'm super tired but hopefully I will snap out of it or I will just cancel something... but I hope not.
Time to check BS and get a little girl up! Wait till you see our St. Pat pics!

Friday, March 16, 2012

Let me tell you about a great week

I was going to write a blog today about what I call my "regimine" that included meds, slathers. sprays, drinks, teas, Evalyn and dog meds, but it has been such a good week compared to so many people in the world and I didn't want to shock you too much right before St. Pat's Day. So I'll do that one later. 

I'll start with today. Evalyn is 20 months old today! Here she is with her Golden Bible and her Easter story book. It's so sweet that she already prays with us and says Jesus and chooses to read books about him. This week I found relief in starting going back to the chiropractor, in my morning devotionals, the man Ivan Summer at the Daily Grocery that helped me find Aloe Juice, A man named, crap forgot, he was playing the violin on Clayton Street, I gave him a dollar and we discuss his MS. Athens was so nice today. It is still spring break and I was able to find so much peace in not having to wear a mask and just feel a little normal. We also had two different people make us meals and was taking out to eat. Jonathan and I have big plans this weekend and we are super excited. This includes a free hotel, free childcare, free tickets to world of coke, a St Patrick Day parade, and free concerts during the day at Centennial Park. The next morning we get to see the end of a half marathon that friends are running for the L&L society. 

Here is Evalyn reading a book to her Poppa Bill. 

video
She is learning new words and speaking sentences at a crazy rate. It is almost overwhelming because I know I can't remember everything. She has Yellow and Purple down now, she can drink out of her cereal bowl and say most of the words that she learned how to sign. She  loves to dance and has amazing rhythm. She seems to understand most of what      we are saying, whether she obeys or not, well, it depends on her mood but we are being consistent. Now that takes a lot of energy. She is still eating great and likes to try new things. She is amazed by nature, books, music, art, and anything mommy is doing to herself. 


She allowed me to paint her nails and tonails  with purple glitter.

Last week, my mom came and we went to Locos to eat, it was so yummy. My mom had to take Evalyn to the doctor early to eat her first live vaccines and then she had to go to my mom's for two days so I wouldn't get the chicken pox.


Grandma kim helping her learn how to color. Evalyn loves the fried pickle chips, yummy. 

 While Evalyn was gone, we went to Cine to watch the Artist. It was even better the second time, and at this place you get to have a drink while you watch the movie. We had some kind of Duck beer, it was good. The soundtrack is beautiful.





With the nice weather this week, we were able to take some golf cart rides (GCR) and take Wallace on a run 


We ran into my Poppa bill and his dog Tuffy. Too pretty to be a boy, the dog that is. 

Our family and the mean green golf cart. 

Evalyn is loving to climb right now. She climbed up and told her Daddy to sit  right there.






My beautiful Granny. 

Silly Poppa bill, he is already teaching Evalyn how to honk noses.

We had a great time. Judy , Evalyn, and I stopped at a  consignment store. Evalyn did so well following her Mommy and Aunt Judy.  Judy and Evalyn had fun taking there hair down and reading together 



Loving spending time together! 



 .



                                                            Evalyn picked these flowers for me.... but not all out of my yard.

God has been so good to us and we are thankful.