I officially hate PET scans. It’s such an emotional roller coaster going in to see what is happening inside my body. I really try everything I can to be positive and optimistic as I mentally prepare myself including a ton of prayer. But even when I was feeling quite calm and at peace last week before my scan on Thursday, I know subconsciously that it’s coming and the muscles in my forehead were working overtime because I think I was furrowing my brow all the time. Can someone say Botox?? I need it! I have been googling how to get rid of wrinkles on my forehead… yah I know I have bigger issues, but I still care.
There are a number of things that have been confusing with this most recent appointment. First, I had my scan scheduled later than usual on Thursday (1pm) and my appointment with my doctor was at 3:30pm. So I knew the official report from my scan wouldn’t be ready and we would just be looking at images together guessing at the dark spots on the scan and the brightness on the uptake of the radioactive glucose. The second thing that was confusing (on my part, totally my fault) was that I was supposed to be fasting for 6 hrs before my appointment. Well fasting to me is not eating, drinking clear liquids, but without thinking I drank some green tea with lemon about 2 hrs before my appointment and chewed some non sugar gum (with Xylitol). I am trying not to beat myself up about this, but I kind of am. The tech said that I was supposed to stick to clear liquids. 😬 oops.
My blood sugar was slightly elevated when they did the blood glucose level check so they waited an hour to give me more time for my system to digest the sugars that I had unintentionally put into my body.
So we did the scan and then went directly to the appointment. I was feeling very positive that we were going to get a stable result! But when we pulled up the images and compared them with previous scans, the assessment was that we had progression and needed to make some decisions.
After my doctor said that, I was sort of like a deer in headlights, not quite processing everything else he was saying, but I did get the gist that we needed to do a biopsy to find out exactly what was happening. It is possible that it has transformed again. It is possible that I am no longer expressing CD19 (the antigen that the CAR-T cell therapy was targeting). There are a lot of possibilities… this disease is such a moving target and it is hard to know without getting a sample.
The good news is that I know Dr. Miklos is looking out for me. The clinical trial that he is running that targets CD19 and CD22 antigens has a long list of people wanting to get in and he told me that the next open slot is mine if I want it, that would be April 17.
Okay, well I really thought that changing my diet, juicing, cleansing was going to help me stay stable but apparently it didn’t… or did it?
The next day (Friday) my doctor sent me the report which actually measured all three tumors at essentially the same size and the FDG uptake (activity) of the tumors was overall less.
So that’s pretty confusing and I wished we had had those results from the radiologist when we were having the discussion in the office because I would have been doing a little dance right there with Dr. Miklos. But now I have doubt that the scan results are truly what they are.
I have been feeling so great, I can’t imagine jumping into another clinical trial right now unless it is critical that I need to. Especially when our family has just hit a stride from me being back from the last one. We have enjoyed a lot of good times these last 3 months! Two birthdays, hanging out with my buddy Shari, three Odyssey of the Mind winners, serving green eggs and ham and putting together a last minute Dr. Seuss costume, making Addison’s unicorn birthday cake, a sprained ankle, and cleaning out my pantry with the help of my Uber organized neighbor Maggie!
We have some decisions to make, but thankfully not today. Kaitlyn just texted me this verse of the day.
She is so sweet and God has shown me just how blessed I am through this experience even though it is hard.
We head home today and tomorrow we go on vacation to San Diego for Spring Break. I am excited to go to the beach and just play in the sand with the kids. But to be honest, I feel like the last few months of my life have been a vacation from having to think about hospitals, tubes, chemotherapy, face masks, germs, and everything else that comes with this disease.
Brandon and I spent our weekend in Monterey… it was so nice to have some down time.
I don’t know yet what we will be doing, but I do know that I will be praying for God to give us clarity and direction. He has always been faithful to orchestrate things in just the right timing, so I trust He will guide our steps. And as my dear friend Jamie always says, We will make every day count.
“But I will hope continually, and I will praise you more and more.”
Onward and Upward.