Wednesday, February 3, 2010

January 21, 2010

Let me start with the amazingly great news we received today!!!!  I was chosen to receive the clinical trial drug today!!!!!  This is a specific prayer that we were on our knees for.  It is so cool because the way you are chosen is by randomization done by the computer.  Thank you for those prayers.  

I've decided to say "from the top of my heart" instead of "from the bottom of my heart".  I had an echocardiogram today, which is an ultrasound of the heart.  Jim and I got to see my heart and hear my heart.  It was so cool!  The last part of the echo was looking at the top of my heart -- it's an incredible piece of God's artwork.    

We spent some time with the genetic counselors today.  It's mind boggling the genes we inherit and how it works on down the line.  I filled out information for my family all the way from Grandparents, Parents, Children, Siblings, Nieces, Aunts, Uncles and Cousins on both sides of my family.  I have a big family -- it was neat to look at.  

I was asked to participate in another research study for the BRCA1 gene.  Really all I needed to do extra was to give a vial of my blood for the research, which they said I could do another day.  I kinda had a rough day with the blood draw yesterday (thanks to Lena yesterday for making the last attempt painless).  

Then another sweet research nurse, Nisreen came in to ask me to participate in yet another research study -- this one is through the Lynn Cohen Foundation.  MD Anderson is providing 200 patients for the study and I was about number 115.  It's a painless study -- they'll follow me for the next few years.  Those research nurses are a little bit like stalkers.

I also got to talk to Dr. Jennifer Litton who is involved in the genetics department as well as Oncology.  She too was very informative.  She' referring me on to a Gynecological Oncologist -- because of my increased risk of developing ovarian cancer due to being BRCA1 positive.

While waiting on our appointment with Dr. Green, Debbie, my research nurse came in to tell us that the echocardiogram results weren't in yet.  So therefore we had to wait to find out what my randomizing would be. So Dr. Green checked me out, talked about my chemo treatment on Saturday and some prescriptions I would be getting.  Then we talked some about music.

In the 11th hour another great research nurse came in, this is how she started, "I know Kaylene (genetic counselor) told you we wouldn't need to get blood from you today, BUT, we do.  We need to get your blood drawn before chemotherapy for the study.  If you don't want to I understand."  How could I not?  I told her I was a hard stick so she went and got Michelle.  Michelle was the nurse who had a hard time with me yesterday but Angelica didn't know it was Michelle.  Anyway -- I told them, "you can have my blood but you only get one stick".  Angelica did great I didn't even feel the needle go in.  Debbie got the 2 vials she needed from me too.

Debbie had told us that she would be in touch tomorrow to let us know whether or not I was chosen for the drug. But while my blood was being drawn she got the echocardiogram results, went and entered my info into the computer and TADA!!!  I will be getting the trial drug!!!!!  Jim and I started to cry, so did Debbie.  We are so happy!!!

I also wanted to let you know that yesterday's biopsy went well.  Dr. Stephens noticed my clinging cross, and told me she has a few.  She keeps one under her pillow so when she's not holding it she can just touch it.  When the biopsy was over, Dr. Stephens touched my hand and said, "Best wishes".  

I will have another biopsy on Monday and that's it for a while.   It's pretty cool being in a clinical trial, my research nurse was in there with me the whole time through the biopsy.  I told Jim today that I feel like a VIP!!

Kelli just told me she wrote a story today for school. It was about me having cancer, the ending to her story was her crying and leaning on me, my shirt was wet from her tears.   She leaned back and said, "it's going to be okay Mommy because I love you".  What a great ending to her story!!  I am truly loved.

I love you all from the top of my heart!!!  Thank you all for your help and your constant prayers!!

Love & blessings,


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