It is Wednesday afternoon and Marti and I have already had a good/busy week.
On Monday we drove to Durham NC to be ready for an early appointment on Tuesday. We made the drive in 2.5 hours less than it took us to fly there a couple of weeks ago. I am not sure we will always make such good time, we had easy traffic and good weather. Also judging by the number of orange barrels on the side of the road it looks like NC is getting ready to declare war on I-40.
Tuesday I had the leukapheresis (collection of my white blood cells). This was a 4 hour process which was timed down to the minute. 350 cc's of blood were collected and before they could take the IVs out of me a person was there with a cooler to collect the white blood cells and to take them to the lab to begin work on them to create my own unique vaccine.
For you bio majors I will try and explain how this is going to happen. For you Political Science majors, I will try in do it terms we can understand.
The vaccine that's created will be loaded with RNA which stimulates Dendritic Cells which will be used to fight the protien found in brain cancers. (clearly I am trying to summarize what is on a sheet of paper and really have no idea what I am talking about) In addition I will be receiving a drug called granulocyte macrophage - colony. This drug will help the vaccine boost my immune system. If you really want more information you can probably read more at the web site for the Robert Tisch Brain Tumor Center at Duke University Medical Center.
The other interesting thing we found out is the trial is closed, they are accepting no more applicants, but somehow I got in. I believe we
must have had a strong advocate here in Danville advocating for us.
Marti and I are getting help in many different ways from many different people, and we need it. There are so many things to follow through on that we have a notebook divided by pharmacy, insurance, Commonwealth Cancer, Radiation, Duke, and UK. When we meet with any of these folks we both take notes and then compare when we get home. Still issues come up that will make you crazy.
For example my chemo drug dosage is 160mg. The drug company does not have a pill in this dosage so I will have to take a 140mg and a 20mg. While Marti was driving yesterday I received a call saying the insurance would not authorize the 140mg pill, so I would have to take 8 20mg pills at a time. The oncologist office was all over it, but the bank's HR rep got involved, an outside case manager got involved, and I spent about an hour on it. In the scheme of things it is very petty, but is an hour that all of us could have done something more important. In the end we got the 140mg pill.
By the way I had my first radiation treatment today and took the first chemo pills. One down, 32 to go. So far so good.
Thank you for caring.
We're keeping you both in our thoughts and prayers.
ReplyDeleteI am so thankful you have a strong advocate and a large group of supporters close by who will help when you need it. What a blessing.
It's off to the Duke website I go. I'd like to learn more about your trial. Maybe they'll have a pretty picture of it for those of us who studied the color wheel in college.
My goodness, that's a lot to absorb. You are so smart to take notes. I can't begin to imagine keeping track of it all. You made last night's post at 5:32. Since your radiation was to start @ 4:00, it must not last too long. All good news. Take are and keep posting.
ReplyDeleteBill, I just read all the posts so I could catch up. this is not an easy journey.
ReplyDeleteMy dear ole friend, you will be in my prayers down here in the sunshine state.
God bless,
Glenn Rogers