Update regarding port and new treatments.

**Long post...I will star at the end of the medical updates**

First, let me give some background on my appointment schedules. I have blood and urine samples done weekly with all results sent to Dr. Burzynski. I now have my Herceptin treatment (this is the main medication treating the HER2 gene level) weekly with the Avastin (this is the medication targeting the blood vessels supplying the tumor) piggybacking the Herceptin every other week. I alternate meeting with my local oncologist or his nurse every two weeks.

The blood work is done on the same day as treatments so the nurse can go ahead and get the IV started. As I've lamented since day one I have not been blessed with veins of gold...as a matter of fact they've taken on the names "slimy, roll-y, slippery veins". During my surgery time at UAB my mom and I laughed that if Heavenly Father was going to give me this experience couldn't He at least have given me good veins??

So, yesterday I asked about having a port put in. I'm rather surprised no one had officially mentioned it yet...other than the wonderful nurse who tries her best NOT to torture me too much each week (and she really IS good, it's me.) I'll explain a bit about a port for those who aren't sure what it is. A port is a central venous line that does not have an external connector; instead, it has a small reservoir that is covered with silicone rubber and is implanted under the skin. Medication is given by placing a small needle through the skin, piercing the silicone, into the reservoir. When the needle is withdrawn the reservoir cover reseals itself. The cover can accept hundreds of needle sticks during its lifetime. Blood can also be drawn from a port, thus elimating any need for other sticks. It is possible to leave the ports in the patient's body for years; Installation and removal of a port is usually a simple outpatient procedure. Some patients use a numbing cream over the area before a stick (like Emla cream) but I imagine it can't be any worse than being stuck multiple times in one sitting, right?

I scheduled a consultation with Dr. Buckner but couldn't get in until July 19th. At THAT point we will decide a time for the surgery. I am going to keep trying for an earlier date though. It seems so far away.

My plea to everyone is to pray that my slimy roll-y veins will make it until I can get a port in. I need all the good thoughts and prayers these little guys can get. My arms and hands are all bruised up.

As far as the medications go, I am still feeling good...some minor annoyances but nothing like I would be experiencing if I were under the "Standard of care" that is prescribed. I am being backed off of the steroid again, thank heavens...I was starting to get puffy! All others are the same.

My next MRI will be in approximately 4-6 weeks. Dr. Becdach speaks of "stable disease" meaning no change.

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Now for a few fun things...I've had some wonderful visits with excellent friends the past few weeks. Jenny and Mandy drove up from Florida for some Eclipse time! We spent way too much time NOT sleeping, enjoying some yummy food, and wig shopping! I so appreciated them going with me. I love that they pulled me a bit out of my comfort zone and I LOVE the wig I bought. It's been interesting getting used to wearing it...I haven't had this much hair around my face in a long time but I love it! And my girls love helping me "fix" it! It's still so hot that I've only worn it out for "nice" occasions, sticking with a cap or just my nearly shaven head for going out casually. I've also visited with my good friend Amy and her husband Paul, who have just returned from Singapore. We had a fun dinner and movie night out with them where we found our seats early, decided to visit the restrooms and get snacks and then wandered into the completely wrong theater and sat down. We didn't figure it out until we were being asked to put our 3D glasses on! We were wondering how we all managed to do that!

I truly appreciate each and every one of my friends and family. You all hold such an important place in my heart and mind and I think of you constantly. We also know that our family was put together for a purpose. We balance each other as I never thought or imagined we could until now. Our children are learning things and talking about things and praying about things that are so important. Of course I always feel that my load is the lightest. I follow "orders". But I appreciate each day of energy and look forward to the nights when I go to bed LEGITIMATELY exhausted. It's not fair if it's "just" the medicine!! haha

I know this was a long post...so thanks to those who didn't mind!
Love you all!!
Amy