Day 15 – Our New Battle Plan
Today is the day. The day that we meet with the Oncology team at the Mayo Clinic in Jacksonville, FL.
Before I get into the details of the day, I wanted to shout the biggest thank you to our friend Lori. Without you, we would still have 30 days to wait until we met with the team at Mayo. A lot can happen in 30 days and we are forever grateful for your love and kindness to reach out to Mayo and help get us an appointment sooner. We love you and your family more than you will ever know!
Today started very early. I didn’t sleep much last night because I was so scared of sleeping through the alarm. One of those wake up, check the clock, shoo, it’s only 1230am. Wake up, check the clock, shoo, it’s only 230am. And so on and so on. But eventually the clock said 430am and I thought that was a good time to get up and get ready for the day. Our appointment is at 7am today so I had plenty of time to shower and prepare for the meeting.
Feeling wise, I don’t think I have been this anxious for anything in my life. I feel like my heart is beating so loud you can hear it from across the room. I was hoping that researching pancreatic cancer non-stop would help ease the anxiousness but it hasn’t. It has stopped the fear a bit but not that tight feeling on my heart (no, I am not having a heart attack. It’s just anxiety). I think today will stop, or at least ease, the tension but I don’t know what will happen once we walk through the Mayo doors. Putting the anxiety aside, it was time to go.
It was raining this morning and coupling that with the darkness from the new time change (thanks daylight savings time), made it a little more difficult to navigate this new and strange place. Slowly the Mayo Clinic main sign came into view. It was a beacon of light on this dark, rainy morning but it didn’t inspire me that we were here, it absolutely petrified me. I know this is one of the top cancer centers in the country but I didn’t want to be here. Not because of the treatment, the treatment is going to come from the best of the best doctors. Nope, I didn’t want to be here because being here makes everything very real. As we made the turn at the traffic light and started down Mayo Blvd., things were very real indeed.
Now everything is rainy and dark. I’m trying to see signs to figure out where to go. I feel like my eyes are failing me because I can’t see the signs. I have the car GPS, telling me to turn around because it doesn’t know the exact building we are looking for. There is all this traffic of people coming to the Mayo Clinic to start their day of work. And to top it off, I had the most anxiety ever. To say it was stressful is an understatement.
We did manage to find the building and we parked the car. I gathered all my stuff and while I waited for Sean to get his things, I stood there looking at this building we were about to walk into. The building looked ominous. If I could animate the building , it would have scary red eyes and a mouth with large teeth chomping up and down as people entered. While I was standing there, Sean came over and grabbed my hand. At that moment, reality was back and I looked up at him, he smiled and said “Ready?”. I said “yep, let’s do this.”
We walked across the street, said good morning to the security guard and went up to the front desk to register. I’m not sure what we expected it to be like inside but it was nicer than we thought. It was actually a gorgeous waiting area. It didn’t feel like a hospital at all and that made the arrival a little better.
We were called back to the nurses area almost immediately after sitting down. I just thought to myself “wow, that’s super punctual. Not like any doctor we have seen before.” In the nurses station, they took Sean’s vitals (height, weight, blood pressure, temperature, etc.). The nurse was so nice and after she finished, she sent us to the 3rd floor to wait for the doctor. The 3rd floor waiting area was for Oncology patients. We waited about 15 minutes and we were being led back to the patient rooms. It was the exact time of our appointment. I know this was probably a fluke and probably the only time everything will be on time but for me, it eased my nerves. I like punctuality. I like when things happen at the time they are suppose to happen. You rarely see this with doctors. I was grateful for this one time when things ran smoothly. It made me feel like we were in the right place, at the right time.
We met with Sean’s doctor and we asked our questions and he gave us the answers. We got to see Sean’s x-rays for the first time and we got to see Sean’s tumors for the first time. It was a morning when fear was thrown out the window because we were given more knowledge of what was going on. The doctor explained to us that Sean was a good candidate for a clinical trial for pancreatic cancer. I have been researching these since we left the hospital and I was excited to hear this. Sean will need to have his blood tested to see if he qualifies but it was a start in the right direction.
The treatment protocol: If Sean is qualified to take part in the trials, the protocol will be a 2-week course. The treatment schedule –
Day 1: Sean will be at the Mayo Clinic receiving around 10 hours of chemo. The chemo treatments are not all day. They are chopped up in chunks (for example and this is not specific yet because we have not started but something like 2 hours of chemo, followed by an hour break. And then 1 hour of chemo, followed by a 2 hour break). This is the main chemo day. After the treatment day, Sean will have a pump attached to his port and will be sent back to the hotel. The pump will contain either the experimental drug or the regular drug (I will explain more of this at the end).
Day 2: We will be back at the hotel and we will have to journal when Sean’s pump starts and stops.
Day 3: We will go back to the Mayo Clinic and Sean will have the pump removed. They will also be monitoring Sean’s heart at this time to see if there any complications. Heart arrhythmia is one of the side effects of this medication and they have to be diligent on watching to make sure nothing is happening to the ole ticker. After the Mayo appointment, we will drive back to Orlando.
Day 4-6: Nothing happens. Sean is able to carry on normal activities as much as he can. He can work. He can exercise. This is all dependent on his feelings after the chemo treatments.
Day 7: We go to a local bloodwork office. They will draw the blood needed and send the information back to Mayo.
Day 8-14: Nothing happens again. Sean is able to do what he can.
Day 15: We go back to Jacksonville and Day 1 starts again and we repeat the protocol again for the next 2 weeks.
(If anyone is interested in the clinical trial, you can check out clinicaltrials.gov and look up PANC003. That’s the name of the clinical trial)
The protocol is pretty simple in the grand scheme of life. We are also allowed to drop out of the study at anytime and for any reason. If at any time there is a negative reaction or the cancer gets worse, we will immediately stop and another course of treatment will be started.
We are optimistic about this clinical trial but there are a couple things that are not in our control. The first is will Sean qualify? This is a huge concern for us because if he doesn’t qualify, we feel like we are wasting time right now when Sean could be starting treatment. We have to wait to get on the schedule for the qualifying blood tests. Now time wise, we are only talking about a few days (they want to have Sean tested by the end of this week or the beginning of next week) but still that’s a few days where he could be getting chemo treatments.
The second concern is with the experimental medicine they are testing. There is a 50-50 chance that Sean will not get the experimental chemo and will only get the regular chemo (the regular chemo is the current treatment for pancreatic cancer). If you can remember back to high school biology, the regular chemo group is the control group. Unfortunately, your placement with either the experimental or regular chemo is completely randomized by a computer. We will know which treatment Sean will be getting before we start but we are praying that it is the experimental drug. Either way we are grateful to be in the study, if nothing but to help someone else one day going through this exact same thing. But we are so hoping for the experimental drug.
We listened to all of the doctors and research associates and we signed on the dotted line. At this point, we have nothing to lose. Like I said as we were walking in the building “Let’s do this!”.
We gathered up all the papers, shook all the doctors hands and it was time to go. I sat there with the doctor and said to him “That’s it? We are free to go?”. He said, “That’s it. We will call you when we have the time slot available for the qualifying tests.”. I was like ok. I looked at Sean, smiled and said “Let’s go home.”. We walked out of the office and back to the elevator. We were talking about how this didn’t go anything like what we thought. I’m not sure exactly what we thought was going to happen but it turned out to be just a regular doctor visit. It felt so common place. Not scary. Just common. Remember how I talked about going to the bathroom in the dark, well the light was just turned on and we are no longer fumbling. We have a plan and we are ready to attack that plan the best we can.
We walked out of the lobby and headed for the car. I threw all of my stuff in the back seat, closed the door and turned around to look at the building that was so scary this morning. This morning it was dark and rainy but now the sun was out and this building was absolutely beautiful. The monster was gone. This beautiful building was shining with all of it’s windows and warmth. This building will be the building where the love of my life will fight the hardest battle of his life. I smiled, took a deep breath and once again said, “Let’s do this!”.
Back to Orlando….