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.

Tuesday, November 30, 2010

Nov. 30st One year diagnosis… looking back Part 1


             

              Last year at this time, we were on cloud 9 because we were going to have a baby and had only known for a few weeks.  We had my first OBGYN appointment a couple days before Thanksgiving and wanted to hear the heartbeat before we gave the news and we also gave the routine blood work. On Thanksgiving Day we gave my Mom, Dad, Jen, and Dan T-shirts to break the news. You should see the video of my mother screaming her head off… oh the excitement. A baby! Surprise! How were we going to do this with me working full time and Jonathan going to school full time? Ha, were we so silly. You can always handle more than you think you can.
                So, it’s not quite a year, its give or take a couple of days. I say a year because for me, the Monday after Thanksgiving was the bomb. Well, looking back, it was just Little Boy, not the big one. My OB called from his cell phone around 8 am that Monday. I didn’t recognize the number and well, it was first thing Monday morning and I don’t like to answer the phone sometimes. Sometimes is not even on. Later, I listened the message: you always find out bad news soon enough. In an urgent voice the doc said, “ Mrs. Cape, This is Dr. L, we have some concerns about your blood work, you WBC is 43,000. We are getting you into see a hematologist ASAP; please call the office when you have a chance.” Google it baby. Well, wouldn’t you have? There were pretty much two choices….. horrible infection or leukemia. No signs of infection, fever pain, swelling, etc. I cried to Jonathan for a minute and called my mom. “Let’s not get upset”, “It could be wrong”, yada yada. I knew at that point… at least I thought I did. I apparently don’t know anything… that’s one thing I have learns. We just think we KNOW. I called the OB office and they said that the Hematologist could see me the next week.  I got the number for the hematologist, called, and the message said “Thanks you for calling Georgia Cancer.  Cancer…. I heard someone else say it now. Oh no, wait a week, I would lose my mind. My Poppa called the office and said “This is Dr. Warren; my granddaughter needs an earlier appointment than next week.” Ok, got it. Funny, I found out later that they thought that it was Dr. Warren that is still practicing in Athens that called, not my retired grandfather. Random movie scene from Spies like us…. Dr., Dr. Dr. Dr. …. If you haven’t seen it, it’s good Chevy Chase humor.
                   The next couple of days is kind of Blurry. We didn’t want to talk too much about the baby. What about the baby? I was of course scared that since it was so early, you know. I went on with work, the next couple days, mind working over time, body so very tired. We prayed at small group.” Lord help us, but let your will be done.” My mom came to Athens for the hematologist appointment AT Georgia Cancer.  I gave the first of a multitude of labs I would give to check my counts. We met Dr. Lloyd for the first time, who also knows my Aunt Sharon that works here at Emory; he said that he tried to hire her. We liked him immediately. He was jolly and told funny stories. Labs are back. He said that I have CML, chronic myeloid leukemia. He said for leukemia, it was the best to have, that with the new oral medications people are living full lives. CML previously had a life expectancy of 6 years before this new medication. There was even a chance that the medication could be cure for some people.  I wouldn’t even lose my hair, hey, wasn’t that the only plus to cancer, I thought, wearing fancy wigs and not having to wash your hair? Oh, I crack myself up sometimes.

                What about the baby? He said that he didn’t feel that the baby would be in danger. If I needed treatment during the pregnancy, we would wait until after the 1st trimester. The good thing is we found it really early and I didn’t have any symptoms. Who knows how long I would have gone without knowing, I’m not in the habit of going to the doctor. Well, was I wasn’t. Habits change, by choice sometimes, life others.  This baby may have saved my life.  The pregnancy was normal enough and I didn’t have to have treatment. During Dec, I went to see Dr. K for the first time to get a second opinion. My aunt Sharon recommended him and my cousin Kristy came with me to the visit. Dr. K was great and also confirmed what Dr. Loyd said. After we got the medical bill from Emory, we decided to just stick with GA Cancer unless anything else happened. We eventually decided on Evalyn because it means “life”. God knew that my desire of my heart was to have a baby, and we are still not sure at this point if I will be able to have any more children. We have our sweet baby girl now. What a joy!
                1 healthy baby and 9 months later………..I started on the oral chemotherapy with only a few side effects and my counts went back to normal really quick. We even discussed going off the medication in a couple of years to see if I was “cured”. Around the 3rd week of Oct 2010, I starting have serve pain in my head, shoulders, and back. I quickly had my platelets go low and my WBC shot up again. By the next week, I had to take off from work, very rare for me. I'm in a very rare group whose CML advances quickly instead of slowly. We tried to switch medication but I was starting to run fevers and had bruises on my legs. I was calling the nurse and had a trip to Athens Regional for lab work over that weekend. The pain was getting worse and had moved to my jaw bones. I couldn’t eat or talk without one of the worse pains I have ever had in my life. I remember standing at the kitchen counter crying and I told Jonathan,” I feel like I’m dying.” I was right. I spoke to my aunt to see if she would go to Emory with me that I was going to make an appointment soon. Ha ha  Halloween is my favorite holiday and the party of just across the lake. That day was a blur but I’m glad I made myself do something. Hey, we won the truck or treat and Evalyn got to be our hero, Jesus. Corynne came and carved the pumpkin for me. Looking back at pictures, you can actually see the pain in my eyes.
          My Poppa Bill took me to GA Cancer on Monday morning, Nov. 1st. I couldn’t even drive and thought I might not be coming back. I was smart enough to pack a small bag. I knew I might be going somewhere, the pain was too bad. At the appointment, I had a vein blow up, and they had trouble sticking me. That had never happened in my life. My counts were very high, some too low.  I was sent to Emory for admissions that same day, via ambulance. A few days, I’ll be out…. I had another bone marrow test and other labs that confirmed that it had turned ALL (Acute Lymphoblastic Leukemia).
          I want to right more about my experience with my first few days here, before I started the blog. Honestly, I’m still piecing together those first few days with the help of family.
          I want to move on Thankfulness, Regrets, Hope and Dreams that everyone faces when they realize their time here on earth could be cut short… I want to do a separate blog on this those….. See part 2……
         
                

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