WELCOME

Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!

Please read, comment, enjoy, learn, grow, LOVE LIFE.

Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.

Saturday, April 14, 2012

Medical update 4/14



The first appointment with Dr. Munson, the orthopedic, was very interesting. Of course, I didn't get seen at my appt. time, why would anyone?  I felt like I said that same thing to three different people, the Dr. being the third. The first guy was super dupper cute, I meant to take a picture of him for my mother. I skipped out on taking a pic of me and Jill too :(. Guess you'll just have to live with the fart pics of my knees. The second guess I guess was the assistance, NP, or something, and looked like he needed mouth to mouth, by someone else. Dr. Munson, weird right eye, nice smile, doesn't feel that my bone infarcts (sounds like infarts, like I need more gas!, He thought that was funny), are causing the pain at this point. It's more likely the side effects of the medication. I expressed that I'm taking some PRN medication but not the everyday time release medication and I would rather go through the 5-6 hours of horrible pain then pay a 100 copay to get IV pain meds at the ER and risk getting something worse. He agreed that he would not either if the pain was not horrible everyday but then asked me if I was always this stubborn. I told him, yes,  he hasn't seen anything yet. I did mention that if the pain continued to increase that I would try the time extended. So then he said " So your stubborn, not stupid.". precisely. He said that the radiology dept at the hospital always makes it sound worse than it is, fyi, radiology is my least favorite part of Emory. Don't promise me food and not back it up!!! He does feel that I may need joint replacement eventually, but we will see. He felt that getting another bone density scan asap would be good and also getting my Calcium and Vitamins D checked again in a month. I explained that I'm going through early menopause and that my OBGYN has me on hormone replacement that should be helping my bones but with so many steroids and meds it has not helped. We may consider a more natural approach to hormone therapy. Dr. Munson, then surprising said in jest, " So now your stubborn and bitching." Thinking of the Seinfeild episode  where Elaine is concerned about her permanent record. I laughed and said that I actually pride myself in being less bitchy than most women going through the same thing as I am. I decided I liked him but not sure it was worth the $40 copay. When I return in 6 weeks we will do some more X rays to see if there are any changes. There is one surgery where they drill in to see if they can get more of the oxygen to the area that we may consider in the future. I will start physical therapy once a week, more to encourage me to keep it up at home, as soon as I get back from my trip next week... I'll tell ya all about it... so excited. Doc said I could really use massage therapy but my insurance doesn't pay for it, thanks COBRA.
My lab appointment when fine and my blood counts are doing good. The liver enzymes are reducing that they were concerned about. I saw Dr. Khoury today and we started back on the study drug, blah, but only a third of what I was taking the first and second time I tried it. We also reduced the steroids by 5mg, and I could already tell a difference with my blood sugar and my nerves. Please continue to pray that we can reduce them to the right level, I can lose some of this weight, and stop the deterioration of my bones.

After we left that appt., we had to wait on the the study drug to be processed. Than we went to the 6E where I was able to see my friend Amanda for a few min. She had bags upon bags hanging up. We need to have pole competitions in the hallway! They are going to see what another round of chemo with do and then consider a BMT. She is away from her husband and little boy, a women of God, and is in deep need of your prayers and blessings. If you feel moved by the Lord to bless her family in any other way please contact me.
The next morning, Friday, was very scary for me. I woke up with horrible bone pain. Not as bad as I had had it, but it was pretty bad. Bad enough for me to need help with Evalyn that morning and take pain medication. I cried when Diane came to get Evalyn, but Evalyn was just happy to be seeing her Poppa and eating a good breakfast. It just breaks my heart when I can't do what I need to and have to ask for more help. Pride.... not a good thing. How much more till I'm humbled enough?




My Bone Infarcts

1 comment:

  1. Your report sounds somewhat encouraging, will keep the prayers coming and hope you and family have a great time at Jeckyl. See you wed. Love, G'ma Judy

    ReplyDelete