Supposedly, the crew doing the biopsy was laughing right along with him. Afterwards, the texts between him and Darren (our really good friend) were hilarious. He kept using the phrase turnzontial. Whatever that is...
April 13th was biopsy results day. Again, very few people knew this. That night I was scheduled to speak at the All Ears! gala. We had to be there at 6 and Rebekah doesn't get off the bus until 5 on a good day. We knew that bad news would take much longer than we had time, so we concealed from the girls that we were going.
So we were a wreck. The next few hours were somewhat of a blur. Lindsay, his PA came in first and confirmed it was cancer. So how we managed not to break down. This was the first time we were hearing that there is a "blip" on his CT in his lung. Not anything of concern yet, but something they are watching. She talked about how his tumor is MSI-High (https://www.ncbi.nlm.nih.gov/pubmed/15528785). That means that his tumors should respond to immunotherapy. Then she explained immunotherapy and what they are wanting to do. She leaves to go get Dr. Morris.
We just sat and held each other with tears streaming down my face. Alan kept it together. I later came to realize that was because he was in such shock. He through with his CEA level still in the normal range there was no way it was cancer.
Dr. Morris comes in and gives us more details about the treatment. He is advising a new treatment not yet FDA approved for colon cancer, but that hasn't stopped a lot of insurance companies from approving similar treatments, according to him. He would like to get Alan on it as soon as we get insurance approval. He talks alot about the recent study that was released about how much better this treatment was doing than just nivolumab. This is a 4 doses (1 every 3 weeks) or nivolumab and ipilimumab combined then stepping down to nivolumab alone every 2 weeks.
We asked tons of questions about other options, side effects, etc, but truly believed this was the best option. So we consented on it that day to get the ball rolling on treatment right away.
We left crushed, but hopeful. We have the best option in our sights. We will fight and best this again. We discussed names for these tumors. Some of you may recall, Alan named his original tumor Bocephus! And would say things like NOMOBO or BoHasToGo. Well this time, they are named Marvin K. Mooney, as in Marvin K. Mooney, will you please go now? by Dr. Suess.
Marvin is the tumor by his kidney, K. is the blip in his lung, and Mooney is the spot they have to access through his backside to biopsy!
We made the customary family calls to inform his parents and sister and my family what we were facing and the plan.
We had an hour or so home alone before Audrey got there, so we just spent time processing. After she got there we played with her some before getting ready for the gala. Rebekah got home and Julie came over to hang out with the girls.
We survived the gala. Neither of us wanted to be around people, and yet there we were honoring our commitment. As we worked the room beforehand, I just wanted to be as close to him as possible. I felt clingy, and I NEVER feel that way. It got to the point that I went to the bathroom to try and calm down, I was overwhelmed by the number of people in the room I didn't know, feeling like I was going to start crying at any moment. I typed off a quick text to some prayer warriors to lift me up please. I headed back out after about 5 minutes of hiding. Then we had dinner and the program. Supposedly I did well... I really don't remember much about my speech, except that I kept my composure until the second to last paragraph. I got teary but managed to not to full on cry. As soon as the rest of the program was over, we left as soon as we could.
When we got home, we collapsed into our numbness.
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