Monday, May 9, 2016

First Day of Testing at NIH

Well, day 1 at NIH is behind us. For anyone who has not been here, NIH is  huge. There is security to get into the campus (which visitors will have to go through). We had to get out of the car to let them check for bombs, and other contraband. While that was happening we had to go through metal detectors along with getting all of our bags scanned. Then we got temporary photo id badges... more permanent badges with 1 year access came later in the morning.

We found where we needed to go pretty easily and after getting registered I started off with lots of blood work (18 vials). I also found out that I am the last person that is going to be going through this trial at NIH. The person across from me getting blood work done was patient #1 in this trial. Turns out this is like Hotel California, once you are in your have return tickets for bone marrow biopsies and blood work every 6 months at first, then every year. When I asked the nurse how long you need to come back annually for blood work and bone marrow biopsies her response was "until you die, or you tell us we are crazy and want to stop."

My next stop was for a CT Scan. The best part of the CT test was the sign in the changing room. It was a simple changing room with a bench, selves with disposable hospital scrubs a nice framed picture and a sign. The sign said...."PLEASE, BE REMINDED THIS IS NOT A RESTROOM. THANK YOU, SO MUCH."... There was no sink, or plumbing of any kind, or any drains on the floor. It looked a lot more like a closet than a bathroom. All I could think was how could anyone mistake this for a bathroom? and how many times had that happened before they put up a sign??

While my appointment was at 10, at noon I was still waiting. They were down to only 1 working machine today which left a lot of people extra grouchy because that was just the icing on the cake for a not fun morning anyway. For this test you cannot eat, or drink, after midnight, which results in not the most patient, and tranquil patients to start with. Add to that making people chug about a liter of really vile liquid for this test, then sticking them with an extra large IV needle ... then telling them while it is 2 hours past their appt time you still have to wait for your 5 minute procedure.... most people were not happy, or soothed as much by the warm blankets as they typically can be (tip of the day - always ask for warm blankets in hospitals if you are cold - one lovely, little luxury).

They saved the best for last and off I went after the CT scan for my bone marrow biopsy.. I had clearly blocked out the memory of my last one... and I missed Chad since he has been at all of the other ones I have had.  They were fast with it and by mid afternoon was in bed asleep for the rest of the afternoon.

Tomorrow we go back for more blood work, a stress test and eye exam. Wednesday is more blood work, a clinic visit with the doctor, and then later in the day on Wednesday I will get admitted and have the PICC line inserted. Thursday will be my first day of the infusion.

My parents have been very sweet, and are going to know every corridor of the NIH Clinical Center by the time this is over. We know where we are going tomorrow, but will probably be early "just in case". I had to hold them back this morning so we did not arrive before everyone else!!

Thanks to everyone for your support. I am excited to be here, and sincerely optimistic about getting a much more durable remission from this protocol.

  

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