Day 21-22 – The Good, Bad & the Ugly
This is it, today we head back to Jacksonville to get testing done to see if Sean will qualify for the pancreatic cancer clinical trial at Mayo.
We decided to drive up the day of the tests, instead of spending an extra night in a hotel. Sean wants to spend as much time as he can at home and I wanted to avoid traffic as much as I could. Leaving at 4am was perfect. It was an easy drive to Jacksonville and we even ended up arriving a little bit early. We pulled into the parking lot, took a deep breath and walked in the building.
Blood Tests: As far as testing goes, this day was really easy. They drew blood for blood work and they did a CT scan. These tests will determine if Sean is eligible for the trial. Now the wait.
We had about two hours before meeting with the oncologist to find out the results. Two hours doesn’t seem like a long time but it felt like an eternity. We just sat there talking to each other, trying to reassure the other that the results were going to be ok.
The Good: We met with Sean’s doctor and a research staff member, and they started going through a checklist of qualifying blood test numbers. I was holding my breath as they started. They went through each blood test number to determine Sean’s eligibility and with every check, I let out more and more breath. In my mind this was all happening in slow motion but the actual reading of the list took less than five minutes. At the end, the doctor looked at us and smiled and said “Everything looks great”. It felt like a ton of bricks was lifted off of my heart. We only had more test to go and that was an EKG (heart test). From the hospital stay, Sean and I already knew his heart was in great shape so we just kept smiling through this last procedure because we knew he was in the study (the EKG came back perfect by the way). I cannot explain the joy that was emanating from us. I know we were beaming.
After getting qualified, we were told that placement in the study would happen next. This is the 50-50 chance I was talking about in a previous post. Basically there is a 50-50 shot of Sean getting the experimental drug, along with the regular, aggressive chemo for pancreatic cancer. We were told we should know which part of the study we are in by this afternoon or tomorrow at the latest. No worries from us. Time to go check into the hotel and wait to hear about the study.
I cannot explain the happiness that was coming from us after Sean qualified. It was the first big win in this fight. We both walked out of Mayo with a little bounce in our step. I was so proud of Sean. He is a trooper and I know he is going to give this all he has.
Fast forward to the next day. We didn’t hear anything from Mayo last night and as of 1pm, we still hadn’t heard anything. I decided to call the research team to see if there was any news on which side of the trial Sean would be placed. No answer. I left a message but now I started to panic a little bit. Sean told me not to worry. He said “They are probably at lunch” (I still can’t believe how calm Sean has been through all of this). I smiled at Sean but in my brain I was thinking, “Ok, research team, I will give you 30 minutes to eat and then I will be calling every 15 minutes until you pick up.” I did finally get a hold of the research assistant around 2:30pm and he gave me the news of which part of the trial Sean would be in.
The Bad: We were given the news that Sean was assigned to the control group. Our hearts sank at that moment. So much happiness yesterday to a kick in the stomach today. We thanked the research assistant and then I hung up the phone. We sat there staring at each other, trying to make sense of the placement. Are we still on the right path? Is this still the right place to be? Do we go somewhere else? There were all of these questions pouring out of our heads.
After a bit of cooling down, Sean and I started making a list of all the pros and cons of being in this study. Obviously, this was not the news we were hoping for but were there benefits of being on the control side?
Pro #1: Everyone wants to be on the experimental drugs because it seems like there is more hope but the drug is still experimental and comes with a host of side effects and potential dangers. The biggest danger is to the heart. The new drug has been known to cause cardiac events (hence the final qualifying EKG test). We knew this at the beginning and thought it was an acceptable risk. But now, not getting the experimental drug, we are thinking that may be a win for us. We can’t predict the future but maybe this is protection for something that may have occured.
Pro #2: The chemotherapy Sean will be getting is the current aggressive treatment for pancreatic cancer (when I say aggressive, it means the strongest chemo for pancreatic cancer. There are other treatments that are not as strong if a patient cannot go through with the aggressive treatment). This treatment has been proven effective. We actually met with a pancreatic cancer survivor in Orlando and he was on the same treatment (Hi Mike if you are reading this and special thanks to Charlie for connecting us). So the treatment is still the best of the best.
Pro #3: Sean will get to start chemo tomorrow. If we left Mayo and went back to Orlando, it would probably be at least another 3-4 weeks to establish care with a new oncologist and to start treatment. There was a little bit of tumor growth on Sean’s liver so we knew we didn’t want to postpone the treatment any longer.
Pro #4: If, for whatever reason, the cancer progresses or something changes negatively, we feel that Mayo has all the expertise that may be needed in that kind of situation. They have dealt with this and have the knowledge to handle bad situations.
From our list, we decided that Mayo was the best place for Sean to be. We are here for a reason and we will see the treatment through with the best of the best doctors in the nation. Time to prepare for tomorrow’s chemo adventure.
The Ugly: We were just getting comfortable with the idea of being in the control group when the phone rang. The caller ID said it was the Mayo Clinic. I answered and it was a very nice lady from billing. She started talking about Sean’s chemo treatment scheduled for tomorrow and after reading over all of the tests, informed us that our insurance company hasn’t approved the chemo yet and that we would probably need to reschedule the chemo for next week. My heart sank, especially after hearing there was small growth of a tumor. I had this voice screaming in my head “this needs to happen now”. While she was talking about rescheduling, she said hold on, one of the approvals just came through. She told me she was going to follow-up on the other approvals and she would get back to me with the final word.
I hung up the phone with her and less than a minute later, the research assistant was calling. I answered and he started talking about rescheduling Sean for next week. I stopped him and told him the lady from billing said one of the approvals had already come through. I asked him if could he check on what was happening. We really want to start treatment asap. He said he would check and call back before end of day (it was 4:30pm).
To say we were disappointed would have been an understatement. We went from such a high high the day before to slowly getting worse and worse news today. All I kept thinking was this wasn’t going to happen today, guess I should start planning a trip back to Jacksonville next week.
5pm rolled by and as it approached 5:30pm, I had a call from Mayo. I took a deep breath and answered. The research assistant said everything has been approved. We are good to go for tomorrow. I think I let out a little squeak of excitement at that moment. I thanked him again and said see you tomorrow. I hung up the phone, looked at Sean, smiled and practically shouted, “You start chemo tomorrow!”
Remember that rollercoaster I talked about. See how it jumped completely off the tracks and then crashed back down right when all hope was lost. I think that really is going to be the ride on this journey. Lots of highs, filled with lots of lows. It’s how we handle the lows that will get us through the highs.
Tomorrow we start chemotherapy and begin the journey….
Mention: I wanted to mention that we are staying at a Hilton Home2Suites thanks to an amazing recommendation from our friend Lori 😇. We were able to secure a great low rate for Mayo patients and the hotel is fantastic. We do not have any affiliation with Hilton or anything but the reason I wanted to mention this hotel because of the cleaniness. I have really never paid attention to the cleaniness of a hotel until I had to worry about everything Sean was coming in contact with (this is especially good with COVID-19 going around as well). This hotel is wonderful and the staff are lovely. Thank you Lori for this great recommendation and I am now passing the info along to you as well.