During the last post I believed radiation would begin May 28. This past Monday and Tuesday I had medical appointments. Monday was what the radiation world calls "Simulation" This time Lydia joined me in coming to an appointment. There is a booklet of information you get along with a list of possible symptoms in this appointment, then you are asked to sign this document as a consent to treat. The nurse who started the process of simulation, showed me where R&R rooms are and where the treatment waiting area is. It is a small room with 5 chairs and 4 changing rooms along the outside walls for if you are not prepared enough for treatment clothing wise. (no metal on clothing) When my name was called, I followed a man back to a room where they would be doing my "mapping" CT scan. I figured this would be a fairly run of the mill CT scan. I wasn't entirely right with my expectattions. My Radiation therapist verbally gave me a lot of information which gave me a good picture of what to expect. I was then allowed to lay down and get in "my position". Once they were happy with how I was lined up they drew 3 dots on my skin. One on each side and one on my abdomen. They taped over these before the scan took place. They wanted me to have IV contrast so since I have a port that has 12 week time period on it I have them use that to bump my date out another 12 weeks. The nurse came in the room and went to access my port. I always ask for a warning. I thought she hit my port but I knew that one hurt more than usual. Come to find out she missed my port on the first try. The second try she hit my port but could not get blood return. Since they are not allowed to give me medications (including those needed to unclog my port) they could not use my port. They tell you that your port will be your firend. I do not share this sentiment so when this happens it sours my already poor opinion of the port. The third poke was an IV in my left arm. I should have just had them start there. The CT and contrast went as expected following that.
When my CT was completed the Therapist needed sign off from the doctor to make sure they had what they needed in order to complete the mapping. When he got the nod it was time to make this a bit more permanent. They took the tape off those 3 dots they made earlier and then they tattooed them afterwords. I never tought I would get a tattoo but now I have 3. Following the tattoo I sat up and then discussed scheduling. Due to me needing an emptier stomach I will need to not have food for at least 2 hours before radiation. I asked if they had anything at 4. They responded that they had a 4:15 slot starting Monday June 3. That seemed enough after lunch and late enough in the day I should be able to work. That was the end of my simulation and I was allowed to return home for another 2 weeks.
Tuesday brought my Chemo education and since my port wasn't working I had to get stabbed 1 more time to get my port flushed. Leah and I got to Lemmon Holton to talk with the education nurse. It was 20 or more minutes past our appointment time when we got called back. Again I got thrown a lot of information and took pretty good notes. For most of the meeting it seemed the nurse was sugar coating it for me. When she was almost done she stepped out to talk to my insurance to find out about getting my chemo filled. One of my chemo nurses from 11 years ago stepped in to do my port flush. When she was done we picked her brain about what and how to do this to be tolerable. She suggested taking Zofran 30 minutes prior to the oral chemo I wrote that down in my notes for future refference.
I was told by the education nurse there was a specialty pharmacy in California that needed to fill my oral chemo. We were told to expect a call from them.
Over the next two days we received calls from the pharmacy in Cali. They also did their own version of chemo education. This nurse suggested taking zofran 45 minutes prior to taking oral chemo. Again Noted. On Tuesday we were told the cost of the med was $16,000.00 per month. The pharmacy said they needed a card for my $20 copay. I am thankful I'm not paying the full cost of the med. Once almost done they asked if me having it delivered to my home on Thursday the 30th. I said that would be sufficient and got set up for Email reminders for refills.
Today I started laying out my Treatment days from exactly when I take my normal meds to when I need to eat to when I need to take Chemo. The next step is to begin the process to see how I am tolerating all the treatment.
I ask while I am in this treatment process for prayers of no side effects and normal daily routine.
Kent
