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.

Sunday, February 6, 2011

Don’t make a move or I’ll eat this Duck


Hello,
          Today is my oldest step-daughters, Shannen Gamboa’s 19th birthday! If you don’t understand, well you have missed something and will just have to go back and figure it out. She used to always think that it rained on her birthday and truthfully for about 4 years I think it did. Now I control the weather for her and it has not rained on her birthday in 3 years. I didn’t get to see her today but she seemed to have a good day going out to eat and I suspect seeing her boyfriend (her relationship status has changed on her facebook). If you would like to say a prayer for her please pray that she grows strong in the Lord, seeks him, makes wise choices, and stays safe. I love her dearly, and remember that although being a teenager was hard, it was nothing compared to young adulthood.
Shorty after Shannen and I met, on a trip with White Elementary 

 The days since my 5th discharge have been interesting. We have all been sick. Due to God’s grace, I have not ran a fever and why I’m still here and not back at the hospital. My mom stayed an extra day and I stayed over my Grandparents for two nights hoping to not catch it. A sick child is one of the saddest things in the world. If they could just blow their nose and take some Dayquil it would be a lot better. Right now, they don’t recommend giving anything besides some Tylenol or Ibuprofen.  Wiping a child’s nose has to be one of the downsides of parenting. It’s like you are about to torture them when you reach for a tissue or a wash cloth. They get that look on their face and some move their head faster than your hands forcing you to hold their head in place. Then, after you remove the snot they look at you like you are the worst person on the planet, and sometimes makes a pathetic “ehhh” sound. Then their face is all red until the next snot bubble emerges. Let’s not even talk about the sucker.

            Besides not feeling well and the usual weakness from having poison run through my body, I have been having some ok days. Not sure if I really let everyone knows but I quit taking the anti depressant about three weeks ago. They just were not working for me and I felt worse, not better. I didn’t blog about it because I wanted to make sure I didn’t screw up and go off the deep end. Messing with medication is a scary thing. I of course called the nurse at GA cancer discussed about why I thought I needed to stop the medication and she instructed me how to wean myself off of it. So take note, Heather didn’t say for you to just stop taking your medication. J Don’t get any bright ideas. So, for me, the medication took my “fight” or motivation away. I didn’t feel way down, but never felt up either, I just felt blah and feeling blah all the time made me want to give up. I’d rather have the highs and lows and get pissed off every now and then, then not care.
              The reality of all this still gets me down and makes me angry. There is so much that I can’t do places I can’t go, and people that I can’t see. I missed our cousin’s shower this weekend; I’m missing two different parties as I write this. A couple weeks after my counts go up again, I can do more, but I still have to wear a mask if I’m around a lot of people. I have no desire to put on real clothes, make up, or sometimes to even wipe the sleep out of my eyes. I generally look like crap. I’m ok with that most of the time because usually I feel better than I look; it’s a sick form of control. Makeup is pointless because my eyelashes and eyebrows are mostly gone and my skin is so sensitive to everything. Wearing a wig around the house would be a joke, and with a 6 month old, give me a break. I got a strange compliment last week at the dentist office, " you look better than most people on chemo." AKA, "you look like crap but not crap that has been ran over." I’m probably going to seriously need a makeover when I rejoin the land of the living. Your body changes after you have a baby and let just say that my wardrobe never had time to change.  I talked to Jonathan about the subject this week. I hope that he was telling the truth when he said that it didn’t matter to him if I was in my PJ’s with no makeup on when he got home. There is the once every 3 weeks that we try to go somewhere together, that  I will try to look half way decent, but then there is that pesky mask that just doesn’t go with the outfit.
another cute clothing item never worn outside the house

               Jonathan’s sister was able to come visit us on Friday and pick up a lot of baby items that Evalyn has outgrown. She is 6 months pregnant and has not been eating for two. She looks great. Thank god people come visit us sometimes, at least then it’s not like I’m totally isolated. Also, thank goodness for online shopping. I’m not sure why it is so satisfying and it’s a good thing they price compare.
           Tomorrow, I go to get my blood checked and get a small bag of chemo called vincristine . It’s the one they found in Madagascar.  I’m going to drive myself like a big girl and maybe put on some jeans. No, I’m not wearing lipstick under my mask, forget it. 
Jonathan's parents came to visit and work on the house while I was in the hospital :)

3 comments:

  1. you need to try "boogie wipes"! They are the best thing in the world. no more sore nose for the little one.

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  2. I have some "boogie wipes." They are OK but not something I can afford to spend the money on, if you know what I mean!

    I know how you feel with the nose wiping and snot-sucking. Ugh.

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  3. go online - Buy yourself that awesome 50's swimsuit, put on your pin up wig and walk around the house in heels. Make sure to paint lips on your face mask. Hopefully doing something totally silly and exactly what you really WANT to do will pick you up!! Keep your chin up girl. We are still thinking about you.

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