Update from 9/14/07

It was another beautiful day in the neighborhood. We all got up early and prepared for the “dress rehearsal” of R-DAY (radiation day). We arrived at 9:25 AM. We were supposed to be there at 9:30 AM. We check in via a computer and a scanner (just like the grocery checkout). Jack has an official barcode that IDs him.

We were told to take a seat in the waiting room that has many people coming and going with hair; without hair; young; old; male; female; no discrimination of age, gender, or ethnic genetics. It is a real eye-opener. It is a world that exists right off the street with the world passing by. It is a world of hope, frustration, and reality. Thankfully, Jack’s brother and his wife, Keith and Paula, were with us. They arrived yesterday. They live in Cookeville, TN. Our time together was joyful during our waiting period.

After about 1 hour, I went to the receptionist desk. I found out that we would be called in 15 minutes. Another hour passed by, no word from anyone. I went back to the desk and was once again was told we were next. Still nothing happened. Finally, after 2.5 hours, a technician comes out and informs us the machine has been broken since yesterday. They were not sure if we should wait around or come back Monday. The technician began speaking about Jack’s regime of chemo and radiation as the protocol. You have to know that the traditional chemo and radiation is called standard of care and any experimental drugs are referred to as protocol. She also kept referring to the standard chemo along with one of the protocol drugs as both being protocols. I stopped her and explained no one had referred the Temodar (standard treatment) as a protocol. She said it was their protocol. It turns out that her definition of protocol is the process of treatment in general. At this point, I asked to speak to the radiologist, Dr. Shih. We were able to see her in about 30 minutes.

Dr. Shih starts asking if we have the prescription of the chemo. I told her no one told us that we had to deal with getting it. It turns out that MGH (MA General Hospital) has to order it; they are not sure when they will get it; hopefully, early next week. We suddenly need to go back to oncology and meet with a nurse to educate us on this drug. We also begin discussing eating before treatment.

Jack has to take the drug and anti-nausea medication on an empty stomach. He cannot eat until after his radiation. I then say can he eat when he is only doing radiation since he is taking chemotherapy only 5 days/every 28 days. The radiologist then says, oh, he is taking chemo everyday for the first 6 weeks. This news is the first time we have heard this from anyone including reading the literature on the drug. The radiologist now tells us that we cannot begin radiation without the chemo and they are not quiet sure when it will all start. I am astounded at the lack of coordination as well as the time we spent today doing nothing.

The good of this day is that we are going for a second opinion at Lahey Clinic somehow. I know the head of neurosurgery at Lahey Clinic. I met him and his wife several years ago and occasionally encounter them in the grocery, movies, etc. He lives near us. I will be calling him tomorrow.

I know that the Lord works all things for the good of His children who are called according to His purposes. For this comfort, I am most grateful. Today brought me out of my own shock and grief of dealing with a most difficult challenge.

As I mentioned, we have been consulting with a Dr. from Brazil. He was reviewing all of Jack’s medical records. We found out that he believes he can help Jack. All is well that ends well. We still have each other.

Blessings,

Carolyn